- 1 Congressional Asthma & Allergy Caucus: Hearing from Co-Chairs Debbie Dingell (D-MI) and Fred Upton (R-MI)
- 2 ‘State of Asthma and Allergy Care In the United States’: Luz Fonacier, MD, President of the American College of Allergy, Asthma & Immunology (ACAAI)
- 3 Living with AERD and the Importance of Advocacy: Wayne and Rhonda Nelson
- 4 Shining a Light on Indoor Air and Health Equity: Alejandra Nunez of Environmental Protection Agency (EPA)
- 5 Addressing Health Equity with Not One More Life Trusted Messengers: LeRoy Graham, MD
- 6 Honoring Elijah-Alavi’s Legacy: Food Allergy Advocate Thomas Silvera
- 7 Transcript of the Allergy & Asthma Day on Capitol Hill (AADCH) Briefing.
Allergy & Asthma Network hosted its 24th annual Allergy & Asthma Day Capitol Hill (AADCH) on May 4-5. More than 300 people from 30 states attended virtually and met online with members of Congress and their staff.
“We have to continue fighting so hard, fighting hard to create change, fighting hard to create a lasting impact. With only one voice, we can make somewhat of a difference. But with many voices, we can make a world of difference.” – Thomas Silvera, AADCH advocate
AADCH advocates urged members of Congress to:
- address ongoing health disparities affecting Black, Hispanic and Native American communities
- improve access to medical care and treatment
- ensure funding is in place for federal asthma and allergy programs
- reduce health risks for allergy and asthma emergencies
- reduce environmental health hazards, especially indoors
- develop COVID-19 prevention and treatment strategies
“From the state capitols to Capitol Hill, it’s so important that our voices be heard,” says Tonya Winders, President and CEO of Allergy & Asthma Network. “We must remain diligent in raising awareness of issues that impact the greater than 60 million Americans living with asthma, allergies and related conditions.”
Here’s a recap of the virtual AADCH Congressional Briefing on May 4.
Congressional Asthma & Allergy Caucus: Hearing from Co-Chairs Debbie Dingell (D-MI) and Fred Upton (R-MI)
Rep. Debbie Dingell told AADCH advocates that she supports federal funding for asthma and allergy programs, including the U.S. Centers for Disease Control and Prevention (CDC) National Asthma Control Program. She also seeks to ensure asthma medications are more affordable. Rep. Dingell shared a story of a low-income family struggling to afford their inhaler.
“We need 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,” Rep. Dingell says.
Rep. Fred Upton cited ongoing efforts to update the 21st Century Cures Act, called “Cures 2.0.” The legislation helps speed up development of medications and medical devices and make them available for patients.
“We’re hoping to build on that so that we can solve these diseases that impact – let’s face it, every family, not only here in America but around the world,” Rep. Upton says. “The work that you do at Allergy & Asthma Network is critical as we fight together to improve conditions for people living with asthma and allergies. I’ve got your back.”
‘State of Asthma and Allergy Care In the United States’: Luz Fonacier, MD, President of the American College of Allergy, Asthma & Immunology (ACAAI)
Approximately 3,100 people die of asthma every year in the United States. Millions are also affected by life-threatening allergies to food, insect venom, medications and latex.
Despite recent advances in diagnosis and treatment, asthma and allergies still have a profound effect on a person’s quality of life, Dr. Fonacier says.
“Environmental challenges are likely to increase in the near future and make life more difficult for people with allergies and asthma,” Dr. Fonacier says. “There’s climate change, pollution and urban crowding. As our population becomes more diverse, we need to understand how these conditions play out in patients of varying backgrounds.”
ACAAI’s federal advocacy agenda includes:
- continued coverage of telehealth benefits and licensing;
- safe asthma and allergy treatment protocols during the pandemic;
- the “No Surprises Act” to reduce “surprise” medical billing outside health insurance;
- continued support for food labeling research. (On April 23, the Food Allergy Safety, Treatment, Education and Research Act, also known as FASTER, became law.)
Living with AERD and the Importance of Advocacy: Wayne and Rhonda Nelson
Wayne Nelson, lead singer of the rock group Little River Band, and his wife Rhonda live with Aspirin-Exacerbated Respiratory Disease (AERD). Rhonda was diagnosed with AERD when she was 33 years old. The disease is often hard to identify, even for health professionals. It consists of asthma, nasal polyps and aspirin sensitivity.
Finding emergency treatment during AERD flares is a challenge. When Wayne and Rhonda are traveling with the band, one of the first things they do is locate the nearest hospital or emergency department.
They are working to raise awareness of AERD – not only among patients but also healthcare professionals and legislators.
“What Wayne and I have learned throughout this journey is that it is important that you, as a patient, understand the importance of being your own advocate with healthcare professionals,” Rhonda says. “That’s why we are with Allergy & Asthma Network. The organization supports patient advocates and getting the word out about this disease. I can tell you that while AERD does complicate our lives a little bit, it does not keep us from doing the things we enjoy or traveling to the places we enjoy. It just alters the way we do them.”
“We are grateful for this opportunity to participate in advocacy days like this where we can share our story,” adds Wayme. “We can talk to our federal, state and local representatives. We can let our voices be heard not only for ourselves, but also for all of the patients out there.”
Read more about Wayne and Rhonda Nelson and how they manage AERD.
Shining a Light on Indoor Air and Health Equity: Alejandra Nunez of Environmental Protection Agency (EPA)
The EPA continues to address asthma research and education. The focus is health equity and environmental justice.
“Every day, science teaches us more about the ways our health is determined, for better or worse, by our environments,” says Nunez, deputy assistant administrator with EPA’s Office of Air and Radiation. “It’s the places where we live and work, the air we breathe and the activities we do each day. EPA is at the forefront of developing new science, including for asthma.”
Poor housing conditions and exposure to pollution are among environmental factors that impact people with asthma. This often puts a higher asthma burden on low-income communities, people of color and children, Nunez says.
EPA is working with states and local communities to create healthy indoor environments for people with asthma. EPA is expanding access to in-home visits from health professionals who identify and address indoor asthma triggers. These include mold, dust mites, cockroaches and secondhand smoke.
Addressing Health Equity with Not One More Life Trusted Messengers: LeRoy Graham, MD
Allergy & Asthma Network and pediatric pulmonologist LeRoy Graham developed the Not One More Life Trusted Messengers program in 2020 in response to ongoing health disparities affecting Black Americans. They partnered with Black churches to host asthma, COPD and COVID-19 screenings in the Atlanta region.
“We discussed COVID-19 in plain talk at a community level, geared to the Black community where there was a lot of vaccine hesitancy,” Dr. Graham says. “We empowered lifestyle changes and healthy behaviors through education.”
Allergy & Asthma Network is expanding the Not One More Life Trusted Messengers program to additional cities in 2021. Visit TrustedMessengers.org to learn more.
Honoring Elijah-Alavi’s Legacy: Food Allergy Advocate Thomas Silvera
Food allergy advocate Thomas Silvera shared the heartbreaking story of the loss of his 3-year-old son Elijah-Alavi in 2017. Elijah-Alavi suffered an anaphylactic reaction after he was given a grilled cheese sandwich at his New York City daycare. He passed away at the hospital a few hours later.
Even in grief, Thomas and his wife Dina worked to get Elijah’s Law passed in New York State. The legislation requires daycares in the state to implement food allergy guidelines.
“We’re often asked how we were able to get the bill passed,” Thomas told AADCH advocates. “It’s about passion. It’s about grassroots. It’s about persistence and never giving up. You have to stay the course and stay focused … Just taking a chance to create change, it is so vital and so important.”
Read a Q&A interview with Thomas Silvera sharing his son’s legacy. Visit the Elijah-Alavi Foundation website to learn how you can get involved with Silvera’s mission.
This is a transcript of the May 4 virtual Congressional Briefing. If you notice any inaccuracies, please let us know at email@example.com.
Tonya Winders: Good afternoon. My name is Tonya Winders, the president and CEO of Allergy & Asthma Network, and I welcome you to our 2021 webcast of our virtual Allergy & Asthma Day Capitol Hill – 2021 (AADCH). This event is an annual event hosted by Allergy & Asthma Network alongside the American College of Allergy, Asthma & Immunology. And it’s our pleasure to host you once again today to participate in our virtual advocacy day activities.
Please visit AllergyAsthmaNetwork.org/aadch for more information. As I said, I’d like to acknowledge the American College of Allergy, Asthma & Immunology (ACAAI), and our other sponsors who have made today possible. We greatly appreciate your continued support. We have over 300 attendees participating in the webcast today and many more who will be taking part in our virtual AADCH events this week. We greatly appreciate your willingness to participate in so many different ways.
We must remain diligent in raising awareness of issues that impact the greater than 60 million Americans living with allergies, asthma and related conditions. And we must continue to engage policymakers to move our message forward. In these unprecedented times, I am honored to continue to lead and work alongside the dedicated group of individuals at Allergy & Asthma Network. I want to thank especially our federal director of advocacy, Charmayne Anderson, and state advocacy lead, Kelly Barta, for all of their work in organizing today’s events.
Again, at Allergy & Asthma Network, we have been committed to the same mission of ending needless death and suffering due to asthma, allergies and related conditions through our four mission areas of outreach, education, advocacy and research. You’ll hear more about some of those programs today, but also you’ll hear from leaders in the patient community, in the healthcare professional community and from our federal government agencies on how we are working together to accomplish this mission each and every day.
So with that, let’s get to our program. 2021 policy priorities include the five things that are highlighted here on this slide and again throughout the program today. You’ll hear a great deal about these.
How can we work together to improve access to medical care and treatment? How can we continue to ensure asthma and allergy program funding for those federal programs that I spoke about? Also, how can we reduce health risks for those that are living with allergy and asthma, especially in the emergency events that sometimes occur when you are living with these chronic conditions? Next, how can we mitigate innovative environmental health hazards? We know that climate change is happening. We know that air quality is worsening. And how, again, can we continue to elevate policies to ensure that we can breathe easier?
And then finally, today would not be complete without a policy initiative and focus on COVID-19 prevention and treatment. So, we’ll spend the latter half of our program today focused on some of our efforts in this particular area. First up, we’re going to have the opportunity and the honor and privilege to hear from our Congressional Asthma & Allergy Caucus leadership. First, I’m going to invite Representative Debbie Dingell to the podium. Representative Dingell, please take it away.
Rep. Debbie Dingell: Hi, everyone. Thank you so much for inviting me to be with you today. I’m Congresswoman Debbie Dingell from the great state of Michigan, and I’m also co-chair of the Congressional Asthma & Allergy Caucus. And it’s really an honor to be with all of you today for your day on the Hill. And I hope next year I’m with you in person because I don’t know about you. I’m getting tired of virtual. But it’s still a great way to connect. And it’s really important what you’re doing today.
It is very clear that we need to continue to raise awareness for the millions of people that are living with asthma and allergies. We know that about 25 million Americans are living with asthma, including 5.1 million children under the age of 18, and that over 50 million people in the U.S. suffer from allergies. It’s prime allergy season right now with the pollen count. And that’s why your meetings this week are so important and that the work of the Congressional Asthma & Allergy Caucus is so important.
Our goal is to work with and build on the work of organizations like the Allergy & Asthma Network that bring together members of Congress, staff and the medical community, and patients themselves — advocates, those that suffer from this — and the public to raise awareness about the issues.
The secure funding for critical research and development of new drugs improves the lives of adults and children who are living with these conditions. And that’s why this month I’ve had a few appropriation bills. It’s appropriations season and I have put requests in on behalf of people living with asthma and allergies, including requesting 35 million dollars for CDC’s National Asthma Control Program for the fiscal year 2022, and additional funding for the federal food allergy research at NIH.
This conference will help to foster meaningful conversations as we learn about the latest research and promote awareness of the health and economic concerns associated with asthma and severe allergies and what Congress needs to do in this space.
And I’ll tell you something else, unscripted, and we need to talk about the cost of what an inhaler is. You know, last year, right before the pandemic, I met a mother living below the poverty line, working two jobs. And she has a child with asthma. She doesn’t have the health insurance she needs, and that inhaler costs her eight hundred dollars a month. We need to make sure that the children who are suffering from asthma, adults that are suffering from asthma and allergies, have access to the medicine that gives them a quality of life, helps them breathe. So thank you so much for the advocacy work you were doing, it means so much to not only all of you who are here, but to the millions of people across this country that are living with asthma and allergy.
Tonya Winders: And don’t forget, if we work together, we can get those collective voices, we can make a difference. Thank you, Representative Dingell. Now we are going to have the privilege of hearing from our Republican representative, Fred Upton.
Rep. Fred Upton: I’m Congressman Fred Upton, and I’m so sorry that I can’t be with you in person. I’m so sorry that none of us are there in person as we endure this pandemic for the last 14 months now. But I just want to tell you that your advocacy is so important.
So I’m a Republican congressman from southwest Michigan, that’s where I am now. Now the sun’s out, I can see Lake Michigan across the street to my right. I can tell you that I have been on the health subcommittee since 1991. This is so unfortunate that we don’t have the huge gathering of folks that traditionally come that first week in May to visit with their members of Congress, Republican and Democrat, both sides of the Capitol, to really do the right thing and encourage us to bend the arms of those that may not be with us, perhaps, on this issue to get on board and make sure that we have those important research dollars so that it will make your life easier and maybe even save your life.
So a number of years ago, I was the chairman of the Energy and Commerce Committee, and in those six years, we passed major bipartisan legislation — President Obama signed into law more than 200 bills. But among the best ones that we did was this bill called Twenty First Century Cures: a bill to speed up and expedite approvals of drugs and devices, it was coupled with $45 billion in additional research money for the NIH and was paid for something that Speaker Paul Ryan insisted on.
And we did it. It passed overwhelmingly 390-26 in the House and 92-8 in the Senate. We’re now working on the next version of that. It’s called Cures 2.0, and my partner, Diana DeGette, a Democrat from Denver, we did the first package, and now we’re working on the second one. We’re hoping to build on that so that we can solve these diseases that impact — let’s face it, every family, not only here in America, but obviously around the world.
Now, I’m also co-chair today of the Congressional Asthma & Allergy Caucus and we advocate for policies and legislation that literally will support the 25 million adults in this country that live with asthma, 15 million living with allergies, another six million kids. This is a serious health threat, and it’s made even more serious with today’s pandemic that we’ve all endured. In my state of Michigan, more than 780,000 adults live with asthma, and iut disproportionately affects the minority communities and obviously those living in poverty, too.
And, you know, this respiratory disease takes a significant toll on our economy. In fact, it costs the U.S. nearly $82 billion each year, including the indirect costs in the form of missed days at school and work. So in the last Congress, we introduced the bipartisan School Based Allergies and Asthma Management Program (SAMPRO) Act, really important legislation that’s going to expand federal, state and local efforts to improve the way of life for individuals with asthma.
So the work that you do this week with Allergy & Asthma Network is critical as we fight together to improve conditions for patients suffering from these ailments. I’ve got your back. We’ve got to work together, and not only will we find a cure, but also in the meantime we’ll make it a lot easier, I hope, for all American families as we deal with this in these days of divided government. It’s 50-50 in theSenate and the House is pretty closely aligned between Republicans and Democrats.
The only way you get things done is on a bipartisan basis. I’m committed to do that. And that’s why I’m delighted to be part of this caucus and be the Republican co-chair. God bless all of you and we hope to see you in person next year.
Tonya Winders: Thank you so much, Representative Upton, and also the honorable Debbie Dingell. Again, it’s so wonderful to have that bipartisan leadership from Democrat Debbie Dingell and from Republican Fred Upton.
They are actually leading the efforts as we go out and rebuild the Congressional Asthma & Allergy Caucus in the 117th Congress. We are so grateful for their continued leadership and for advancing so many of the efforts and policies that we’ll discuss today.
Now, I’m honored to invite to the podium Dr. Luz Fonacier, the current president of the American College of Allergy, Asthma & Immunology. She is going to bring us up to date with the 2021 State of Allergy and Asthma Report.
Luz Fonacier, MD: Hi, I’m Luz Fonacier, president of the American College of Allergy, Asthma & Immunology, here to discuss the current state of allergy and asthma in the United States. Despite advances in diagnosis and treatment, allergies and asthma can be life threatening. Even when asthma and allergies are not life threatening, they can have a profound effect on a patient’s daily life.
Environmental changes are likely to increase in the near future and make life more difficult for people with allergies and asthma. There’s climate change, pollution and urban crowding.
As our population becomes more diverse, we need to understand how these conditions play out, in patients of varying backgrounds. COVID-19 creates uncertainty for patients with these conditions. The economic realities of healthcare put pressure on our ability to provide care for all who need it.
So let’s talk about asthma. Twenty-five million Americans are diagnosed with asthma. One in 10 children have asthma, and there’s an annual cost of $80 billion. There are over 3,000 deaths annually and 75 percent higher in black persons than white persons. In children, this is the most common reason why kids miss school and the 13.8 million children missed school days per year. And 40.2 million adults miss workdays per year, 3 to 5 asthmatics have limited physical activity and 71% misuse their inhalers. More importantly, though, one in five cannot afford their medications.
What about environmental allergies? One in five Americans are diagnosed with environmental allergies and four million missed workdays per year have been reported with $8 billion of annual cost. And more than 50 percent of people with environmental allergies say that it impacts their daily quality of life. Two thirds of asthmatic patients actually have environmental allergies. If one parent has allergies, their children have 50 percent more likely to have allergies as well. And if both parents are allergic, their children have seventy five percent more likely allergies. Allergies are due to environmental factors, which includes pollen, dust mite, mold, animal danders and poor air quality. They can manifest itchy, watery eyes, rash, itching, runny nose, sneezing, and just feeling tired.
Allergies can be life-threatening. One in 12 children have food allergies and $24.8 billion is the annual cost of food allergies. Twenty-nine percent of children have food allergies and asthma, and 25% of food allergy reactions occur in students without a previous diagnosis. They have a great burden and fatality. About 150 to 200 fatalities per year from food allergies, 40 fatalities from insects, and 400 per year due to medication allergy. One to six percent of Americans have latex allergy.
There are recent innovations and an understanding that asthma is a spectrum rather than a single disease. Identifying allergy and asthma phenotypes allow for more good precision medicine treatments for the future. There are treatment innovations that have been approved, novel targeted asthma therapies, new relative administration of allergen immunotherapy, the first drug free treatment for food allergies was approved in 2020, and the development of biologics for atopic dermatitis, asthma and more. There’s increased recognition of racial, ethnic, genetic and environmental differences in disease states among patients.
The college led efforts in the COVID-19 epidemic to provide vital information about allergic reactions to COVID-19 vaccines. We created the COVID-19 Vaccine Task Force. We also supported members who have been on the forefront in the fight against COVID-19. We monitored medication shortages and increased risk of asthma patients from COVID-19, participated in vaccine development and testing, and provided the community with timely information about the pandemic, the disease, its treatment, diagnosis and prevention.
We work to decrease racial disparities and increase health equity in the treatment of patients with allergies and asthma. We have provided grant funding to the College’s Foundation to practice grassroots allergy to address health disparities and other challenges related to our care within their own communities. We partner with academic programs as well to increase awareness of the specialty among students from diverse backgrounds. We created the Diversity Task Force. We helped raise awareness of racial disparities in allergy outcomes by providing many learning opportunities to keep our members at the cutting edge of knowledge. And we provide more physician education, information and public information in Spanish.
For our members, we have developed an in-person educational 2021 annual meeting following last year’s world-class virtual meeting. We developed timely and practical resources for healthcare professionals and the public. We have the anaphylaxis toolkit, a yardstick on idiopathic anaphylaxis and genetic testing for primary immune deficiencies. For our patients, we increase public awareness of the specialty. We increase awareness of our robust patient information and our public website, which currently has more than 600,000 monthly unique visitors.
And for our specialty in general, we continue to work collaboratively with organizations like Allergy & Asthma Network. We amplify the College’s position as an advocacy leader for the specialty. We promote and publish world-class research to enable better diagnosis and treatment of allergy and asthma, as well as the advanced understanding of immunology.
The College will always advocate for patients access to specialist care and appropriate treatments. We are looking for continued coverage of telehealth medicine benefits and licensing flexibility. We advocate for the safest treatment protocols for allergy and asthma through the pandemic.
We supported patients and providers with specific recommendations for the language of the “No Surprise Act,” that aims to minimize surprise bills to patients when healthcare is delivered by providers outside of their insurance network. The College joined other advocacy organizations in supporting passage of the FASTER Act, which is great news for our patients with sesame allergy and other food allergies. We look forward to the information that will be collected and reported as part of this law.
So I thank you for this opportunity to participate and represent the College in this worthwhile and very important endeavor for our nation.
Tonya Winders: Thank you so much, Dr. Fonacier. Next, I’d like to turn the focus to Allergy & Asthma Network’s key advocacy issues for 2021. As I said before, we have five policy priorities that truly filter and shape every single request that comes across our advocacy desk. And this year we prioritize the following first: to improve access to medical care and treatment.
We know that we need high quality, affordable healthcare as well as health insurance coverage, including Medicare and Medicaid, for those in greatest need. In order to do that, though, we also need to address the fraud, waste and abuse in all areas of healthcare, especially in our space. We have seen this consistently in the immunotherapy practices that we need to continue to address and resolve, and ensure that our tax dollars — our health care dollars — are being utilized most efficiently and effectively.
We also need to access innovative therapies and technologies, things like you’ve already heard about today: biologics, immunotherapy, telehealth, and remote patient monitoring. These have all come to the forefront in the last year, while care has been delivered primarily in a virtual fashion. But we have to continue to access safe, effective, affordable medications.
Again, it’s so disturbing to hear those numbers that one in 5 people — 20 percent — cannot afford their chronic care medications for allergy and asthma. And that’s why we continue to advocate and support policies like the changes in the complex generic FDA regulatory approval process.
Next, asthma and allergy program funding. It was so wonderful to hear from the honorable Debbie Dingell about the efforts to increase CDC funding, and we continue to advocate for fiscal year 2022 federal funding for all programs that are relevant for asthma and allergy.
Next, we turn our attention and focus towards reducing health risk for allergy and asthma emergencies. Again, you heard from Congressman Fred Upton about the School-Based Allergies and Asthma Management Program [SAMPRO] Act, which thankfully was passed in 116th Congress and signed into law in December of 2020. This creates asthma-friendly schools and ensures that all students with asthma are covered and taken care of with a safe and healthy environment.
Next, food allergies. We know that we need clear and consistent food labeling that helps us to recognize any potential allergen cross contact. The FASTER Act was signed in April of 2021 in this new Congress. And we are so very thankful and excited for the federal decision makers who helped to support and make this happen.
We’re continuing to advocate for airline passenger safety. Well, it does seem like a long way off before we’re flying the friendly skies, as we once did prior to the pandemic, we definitely believe that we need to continue to see epinephrine as the first-line treatment for those who are experiencing anaphylaxis in flight. In fact, airlines should carry no fewer than two packs of epinephrine auto-injectors and conduct annual crewmember training.
When we turn towards our environmental health hazards and mitigating health hazards, we believe that people with asthma and other respiratory illnesses like COPD are certainly more vulnerable to air pollution and adverse health effects of climate change. So we want to continue to push for policies that prioritize the federal investment in climate and health preparedness.
And then finally, as I said before, we could not have had an AADCH 2021 without focusing in for just a moment on COVID-19 prevention and treatment. The advocacy issues that we are focused on with the hundreds of advocates this week are the continued prevention and testing for COVID-19 for those living with chronic respiratory conditions and compromised immune systems.
And secondly, to continue to support funding for healthcare providers, medication access, treatment, access, vaccination access, and to ensure that testing and reporting is especially available for those in minority communities and our most vulnerable populations. We know that, unfortunately, health inequities continue to exist here in our country. We continue to also do this at the state level and this week we’re focused on our federal Allergy & Asthma Day Capitol Hill.
We have a number of bills that are moving through state legislatures, and these are a few of the bills and the topics that those bills cover. So truly, from state capitals to our voices here on Capitol Hill, we are advocating day-in, day-out for those 60 million Americans living with allergies and asthma.
And now I’m honored to actually bring to the podium the Nelson family and have them share their voice of their patient journey, and how they’ve come to D.C., as you can see here in this picture, to actually host meetings and to share with their federal decision makers the importance of allergy, asthma and Aspirin-Exacerbated Respiratory Disease (AERD).
Wayne Nelson: Hi, everybody. We’re very happy to be with you today for this portion of Capitol Hill day. We hope you’re having a great time, as you can see from the slide. I’m Wayne Nelson. This is my wife, Rhonda Nelson. She is the patient. And the folks at Allergy & Asthma Network have asked us to tell our story. It’s kind of unique.
I’ll start off by saying that Little River Band is responsible for us being together because we met at a show in Nashville in 1999. And fast forward to where this story begins on New Year’s Eve of 2000. We were going to play a show. Rhonda was going to come with us. We were in San Diego and her cold and sinus symptoms were so severe that she couldn’t go. And I say that because she desperately wanted to, given that it was the turn of the century and so on and so forth, and so this was a situation that we immediately became aware of that was so severe that she couldn’t attend even a concert.
And that’s where it all began. And it sent us on a path of trying to figure out why these sinus infections were recurring. And that’s the beginning. I want to turn it over to the patient here and let her explain a little more of how we go. And as we’ve done this in the past, thoughts come to me about being on the road and being on tour, which does make our situation very unique. So now I’ll introduce Rhonda Nelson to everybody.
Rhonda Nelson: Thanks, everybody, for listening to our story. Like we said, this began for me back in 2001 and it started out as what we thought was a cold. And I think that is one of the things that is so frustrating for AERD patients. Oftentimes, AERD goes misdiagnosed, or undiagnosed more appropriately, sometimes for years. We’re hearing that from a lot of patients literally all over the world. It did take quite a while for us to receive an actual AERD diagnosis — about a year and a half.
I think just fortunately, by the grace of God, we found a doctor who had just recently returned from a conference on AERD. Back then, it was known as Samter’s Triad, and he put us on a path to figuring out how to control this disease.
I think one of the things that Wayne and I have found so frustrating throughout the time from diagnosis to current day, even though I am very well maintained at this point, is that from the outside we patients look like everyone else. We look normal. We don’t look sick. We hear that a lot: “You don’t look sick.” However, if the disease is not as well controlled as mine was for many, many years, you will have a flare and sometimes you have no idea what sets that off.
Most commonly, people realize that the patients are allergic to aspirin and NSAIDs. So while it may seem simple to stay away from those drugs, it’s not always that easy because there are other things that create flares or reactions within our bodies that can be life-threatening.
What Wayne and I have learned throughout this journey is that it is absolutely important that you as a patient, myself as a patient, understand the importance of being your own advocate with your healthcare professionals. That’s part of the reason we are together with Allergy & Asthma Network and that we and they are such supporters of being a patient advocate and getting the word out about this disease. And I can tell you that while AERD does complicate our lives a little bit, it doesn’t keep us from doing the things that we enjoy or traveling to the places we enjoy. It just alters the way we do them.
And I think one of the things we mentioned about what we think about when we’re speaking about this particular subject, we remember times before a proper diagnosis was found there were life-threatening incidents when we were on the road. And I can tell you for many years when I would travel with Wayne on the road, the very first thing we would look for in a town was the hospital. And we needed to know wherever that hospital was just in case.
And I will say that through the years there have been great advancements not only in the understanding of the disease, but in the treatment of the disease. There’s been great advances made with medications where we can be very well controlled.
But again, it all goes back to finding the right physicians, finding a team that understands you and understands this disease, and then going on a path of finding the correct medications that work for you.
Wayne Nelson: While she was mentioning that one of the unique circumstances where we did find ourselves heading to the emergency room late at night, we were in Minneapolis. We had a great day together. It was kind of a spring day and there were no signs of any kind of flare. We walked back into our room and the air conditioning had kicked itself long after housekeeping was there. And within minutes, Rhonda started to seize up. There was something in the air conditioner — probably mold — that was getting into the air or something, whatever it was.
But the hotel knew that it was the band that was there. So I called the front desk and I said, “Who would we talk to get an EMT to come to pick us up and take us to the hospital? This is drastic. She’s having an asthmatic attack.”
And so they called, the EMTs came, and they wheeled her down to the vehicle. I got in the front seat and they put Rhonda in the back seat.
And for the next 20 minutes on the way to the emergency room, we were being grilled by the paramedics as to: “Okay, we know that you guys are with a band. What drugs have you been taking and what is it that’s really going on here that’s caused this situation to arise?”
And we kept getting more and more furious. We just came from dinner. We don’t do drugs. We are stone cold sober. And this is an asthmatic reaction to something in the room, something in the air. They just would not have it. And she was then immediately rushed into the ER. And this flare was bad enough. She was hooked up to an IV for five hours to get her heart rate and her breathing back to normal. It was probably one of the most severe flares that we had ever experienced.
We’ve made that rush to the ER five times. But that one — everybody experiences that panic and that feeling, but it’s exacerbated when you’re on the road, you don’t have a car and you have no idea where you’re going.
And then on top of that, you get accused of being ‘druggies’ while you’re with the EMT. It was quite an evening. I think that’s one of the reasons that we are so passionate about collaborating with an organization such as Allergy & Asthma Network — so we can lend our voices to share our experience like that and also get the word out there about AERD. About being your own advocate. And about raising our voices to let it be heard about how difficult it is for some patients to obtain the proper medications for this particular disease. The medications are quite expensive.
There are a lot of hassles with insurance and there doesn’t need to be. So we are so grateful for the opportunity to work closely with Allergy & Asthma Network and to be able to have days like this where we can share our story, where we can talk to our representatives, our state representatives, and also when we’re home, our local representatives, and let our voices be heard — not only for ourselves, but for all of the patients out there. We really appreciate the opportunity to share our story with you.
And we so appreciate you guys joining in for Allergy & Asthma Day Capitol Hill 2021. Have a great day, everybody, and take good care. We will see you soon.
Tonya Winders: Thank you so much, Wayne and Rhonda. It’s such a powerful message from you about the way that Rhonda’s disease, a rare disease that mimics severe asthma as a respiratory disease, has impacted their life. They are wonderful advocates.
And again, if you’re going to participate with us in the events of Allergy & Asthma Day on Capitol Hill, tomorrow, we hope that you’ll come back and join us for our Little River Band livestream event. Wayne and Rhonda have been so generous to continue to help support the Network and to advance our mission and move forward. And again, we’re looking forward to celebrating together virtually tomorrow night. I can’t wait to get back in person together as well.
So now for the latter half of our program, we want to turn the focus even more specifically towards the spotlight that COVID-19 has placed on health disparities and the reinforcement of the importance of trust. Never before in the history of our country and our world have we been so focused on respiratory health, as in the last 13-14 months of the year, the COVID-19 pandemic. It truly has provided a significant opportunity for us to realize the importance of breathing, the importance of healthy lungs.
And we believe that this week of Allergy & Asthma Day Capitol Hill and the efforts that will continue after this, we will continue to advance and put that emphasis and priority on lung health. And so as we turn the focus of this portion of the program, we’re going to hear first from the Environmental Protection Agency.
We know that the EPA is doing a lot to mitigate those environmental hazards, as we spoke about before, and also to address climate change. But what you may not be aware of is some of the specific work that they’re doing in health disparities. So now I’m going to invite to the podium in just a moment the deputy director from the EPA. But I did want to share some of these statistics. I’m sorry I forgot about this one. I added it in at the last minute.
When we talk about COVID-19, we know that Blacks and Latinos are at least two to three times more likely to die from COVID-19. We also know that, unfortunately, Blacks are less willing to be vaccinated. And again, we’ve seen some significant improvement here over the last few months in these numbers leveling out. But there still is a gap between those that are in the white population versus those that are in the Black population and their willingness to be vaccinated.
And so we know that, again, throughout the pandemic, the spotlight has been shown on the health inequities and the disparities. And as I said, this quote from the New York Times last October certainly shows us that even in that recruitment of volunteers for vaccine trials that we’ve seen, the severe mistrust that continues to plague our nation is a severe mistrust of the federal government. But there’s also the heightened awareness of recent racial injustices. And this is a formidable task.
And so you’re going to hear about one of our programs in just a moment, the Not One More Life Trusted Messengers. But before that, I do want to focus on the EPA, the Environmental Protection Agency, and some of the work that they’re doing specifically to address disparities. So I’m going to invite you to hear from the deputy assistant administrator for mobile sources in the Office of Air and Radiation of the EPA, Alejandra Nunez.
Alejandra Nunez: I am pleased to have this opportunity to join the panel today and to represent the U.S. Environmental Protection Agency as we shine a spotlight on the state of asthma in the United States with a particular focus on health, equity and environmental justice. Every day, science teaches us more about the ways our health is determined, for better or worse, by our environments, the places where we live and work, the air we breathe and the activities we do each day. EPA has been at the forefront of developing new science, including for asthma.
The demographics of who suffers from asthma in this country are a clear example not just of how environmental quality can impact health, but also inequities in health outcomes and the disproportionate environmental burden of disease that often faces low-Income communities, people of color and children. Asthma prevalence and severity remains particularly high among communities of color and children and adults living in poverty and poor housing conditions are also the children and adults who end up in the hospital because their asthma is poorly controlled or out of control.
Disproportionate burden is also evident in access to healthcare and cost of care, all of which tend to be worse for low income communities and communities of color. These same disparities or disadvantages in health status and outcomes that reflect social, racial and economic inequities also reflect differences in environmental quality, from indoor and outdoor air, water quality and other environmental factors. Communities with the worst asthma outcomes are the same communities with high exposure to environmental pollutants and evidence that more harmful environmental exposures occur in communities with the worst asthma outcomes is well-established.
I would like to provide an overview of EPA’s efforts to reduce the burden of asthma, particularly from poor indoor air quality. EPA works on multiple fronts to reduce harmful environmental exposures that can cause or exacerbate asthma.
I also want to highlight the important work that EPA is doing to promote innovative healthcare solutions for indoor air quality because the indoor environment is now widely recognized as a cost and trigger of asthma. Common environmental hazards found indoors, such as moisture, mold, secondhand smoke, cockroaches and dust mites, pesticides, as well as pollutants generated outdoors such as particulate matter that infiltrates buildings — all are known to exacerbate and sometimes cause the onset of asthma.
These hazards lead to asthma attacks. They require rescue medication and also cost missed days at school and work reductions in performance and productivity, emergency healthcare, hospitalization and even death.
With our partners across the federal government, including the National Institutes of Health, the National Heart, Lung and Blood Institute and the Centers for Disease Control and Prevention, the scientific community, nonprofits and healthcare systems, EPA is demonstrating that reducing exposure to environmental triggers can improve asthma control. In this respect, EPA is helping to lead the federal effort to promote interventions that reduce poor indoor air in homes, schools and other buildings where Americans spend 90 percent of our time and where we encounter most of our lifetime environmental exposures.
As technical experts on the building environment and health, EPA staff has contributed significantly to the evidence-based grounding of our understanding of the role of the environment and in-home interventions, in comprehensive asthma care. Through Non-regulatory programs and partnerships, EPA is working with a particular emphasis on reaching low income communities to ensure that people with asthma, their caretakers, schools and childcare providers, healthcare providers and payers understand how to improve indoor air quality, as well as the medical, public health and economic consequences of not taking such actions in order to control asthma.
And to make real change and improve the lives of people with asthma, EPA is working to equip all asthma stakeholders from the individual to state and community-based healthcare, housing and school systems to carry out straightforward and proven technical environmental solutions that create healthier indoor environments for people with asthma.
Let me now talk about our work to expand sustainably, financed access to home-based asthma interventions for all Americans. Currently, EPA is focused on expanding sustainable access to in-home asthma visits with environmental interventions in an effort to reduce persistent disparities in both access to environmental services and asthma health outcomes, in particular for low-income and African-American and Hispanic children. EPA is leading cross-sector initiatives to promote health equity by building and supporting capacity in communities to deliver high quality environmental asthma care, including expanded access to quality foods and interventions for children with the worst asthma outcomes.
For example, Medicaid spends more than $10 billion annually to treat asthma in children and adults. More children with asthma have healthcare coverage through Medicaid or the Children’s Health Insurance Program. EPA is working with interagency, federal, state, national and community partners to expand healthcare reimbursement for tailored home environment asthma interventions, including for Medicaid for disproportionately affected communities.
To sum up, EPA expects that its capacity and sustainable funding to deliver high quality asthma interventions continues to grow. Tailored care will reach more people who need it to reduce disproportionate in environmental asthma burden. And in doing so, asthma outcomes and equity will improve together. EPA is committed to improving both public health and health equity by addressing the environmental driver of the disease to prevent disproportionate environmental burden before it determines any person’s health outcomes. Thank you for the opportunity to speak to you today.
Tonya Winders: Thank you, Alejandra. And again, thanks to the EPA for all that you are doing. Also, tomorrow evening, we will be hosting the EPA Asthma Leadership Awards, Excellence in Leadership of Asthma Programs. And so please come back and join us tomorrow evening after we make our visits all day virtually. We’re going to reconvene tomorrow evening and celebrate together. And we’ll learn more about those key programs and the really best practices from the EPA-funded programs throughout the U.S.
Now, I’m going to invite Dr. Leroy Graham, who is a pediatric pulmonologist and the medical director of Allergy and Asthma Network’s Not One More Life Trusted Messengers program, to share with us a bit about this important project and the way that Not One More Life and Allergy & Asthma Network is reaching into the community during the pandemic.
LeRoy Graham, MD: Hello, this is Dr. Leroy Graham of Not One More Life. I’m the founder and medical director of Not One More Life in partnership with our constituent organization, Allergy & Asthma Network, to present the Trusted Messengers project, which I’ll discuss with you today.
Well, first, the background of Not One More Life. It started in Atlanta as a novel approach to asthma care. We did programs and continue programs presented in partnership with communities of faith or other validated community partners. Local schools and other validated community partners have been instrumental in us reaching the targeted community.
Typically, our presentations include a short didactic presentation followed by a spontaneous question and answer period. Our participants are screened by validated, in this case, a modified questionnaire and spirometry. Subsequent to that, a pulmonologist, allergist or primary care provider trained as volunteers review the results with the participants. Very importantly, we provide feedback to the primary care provider and specialty providers already involved in the patient’s care.
In this way, we enhance, rather than disconnect or undermine, the basic relationship with the primary care providers. We also provided access to specialty care via community pulmonary clinics in Atlanta. And when we travel about, we find similar resources for the populations where we do expansions. Key to this is telephonic follow-up at one, three, six and 12 months.
Not One More Life a few years ago was incorporated into Allergy & Asthma Network. Allergy & Asthma Network is our home, supports us in aid and grant solicitations, securing grants and management. This has allowed us to really expand our mission and very timely so in the context of COVID-19. We drive community engagement through patient education and vigorous communication campaigns using trusted messengers.
As you see on the left [of the screen], my good friend and colleague Montell Jordan, former R&B star-turned-minister, and I did a very good program by talking about COVID-19 in plain talk at a community level, especially gearing it to the Black community where there was a lot of vaccine hesitancy and a lot of uncertainty borne out of prior mistreatment by the medical community.
What we did in that, we wanted to empower lifestyle changes and healthy behaviors through education. We addressed the barriers to care for at-risk patients with chronic illness, as has been described in COVID-19. We translated this into patient data insights into personalized solutions for the patients kind of on the ground where we can do. We also sponsored a number of programs in partnership with communities based around Atlanta, most notably, Ebenezer Baptist Church, the home of Martin Luther King, Jr., where we did screening and assessments early on for chronic conditions that have been associated with the morbidity and mortality attributable to COVID-19.
We connected patients to patient assistance programs. We gave out personal protective equipment. As we have worked in subsequent visits, we have tried to align ourselves with people that can do vaccines because of the important issue of vaccine hesitancy within this community. We used accelerated digital innovation to reach out to the program and to solicit insights from our patients or our participants going forward.
This has been wildly successful. We have done it now in three communities in Atlanta and we look forward in the near term to taking this elsewhere in the United States.
So the Trusted Messengers project is basically taking our core values of Not One More Life and Allergy & Asthma Network and empowering the community by utilizing the already established trust of trusted messengers — most notably churches and other validated community partners.
So I thank you today. I look forward to bringing Trusted Messengers to communities around you, or your organization might assist us in documenting or pointing us towards such communities. It’s been my pleasure presenting to you today, and I hope you will engage us in our Trusted Messengers effort. This is Dr. LeRoy Graham and I think you for your time/
Tonya Winders: Thank you, Dr. Graham, and I’m going to share our Trusted Messengers video in just a moment to give you an overview of exactly how this actually was executed on the ground. And then I’ll talk a bit more about where we go from here in 2021-2022.
[Video Plays] Trusted Messengers is an Allergy & Asthma Network project, bringing testing, education and care to often overlooked communities. The people that got together to come here, to be able to make sure that we’re healthy, to make sure we’re making the right advances not just for our health, but also for our wellness. And to put all this together, I think was a very, very big deal.
From the time I pulled up the gate, I was welcome. They walked me through the process. They made me feel very comfortable.
The people who are driving through to be tested, some are essential workers, some are families. And our community lacks those resources.
An event like this makes me feel good because it lets me know that someone actually cares about my community.
In the African-American community, we are predominantly affected health-wise. We’re in those fields where we are exposed.
Put all this together to have free testing…
They were educating me about what I needed to know about my body, which made me feel comfortable that I’m on the right track.
To be able to help us stay healthy and do the things that we need to do to be able to thrive as a community…
So I love the fact that it’s not just helping me, but helping others as well and helping generations to come.
To have no insurance needed…
My family is uninsured like so many other Americans, so I was able to come and it was a free service…
We all have an opportunity to come together to do something that’s going to affect us all as a community, I think is super, super important. It’s essential.
This is the epitome of serving the community. So thank you, guys. The doctors thanked me for coming, but I want to thank them for the service, for taking the time, really from my heart.
At the end of each event is only the beginning. Trusted Messengers connect communities to long-term follow up and education to support Black communities.
Tonya Winders: Thank you so much for watching that video. Hopefully, it spoke to you. I wanted to share with you a bit about what we’re going to be doing in 2022. We’ll be taking the model of Trusted Messengers that we performed in 2020 and early 2021 to other cities. We tested well over 1,000 patients. And then we entered the high-risk patients living with uncontrolled asthma into an asthma coach program. And we coached over 70 patients for a number of weeks. That just concluded at the end of March. And we’re still continuing to follow up with those patients and certainly support them throughout the pandemic. Now, we’re going to be taking this program to 6-8 additional cities throughout the country. And so please visit AllergyAsthmaNetwork.org and TrustedMessengers.org to learn more about the program and the cities that we’re coming to and how you can get involved as a volunteer.
So as we come to the close of the final presentation of our Allergy & Asthma Day Capitol Hill briefing, I want to share one more patient story, because the truth is our work is not complete.
And this is a patient story that I think will hit each of us right in our hearts, because it’s unfortunately the story of a family who has experienced great loss. So many times we don’t stop and think about who in our community needs to be aware of the importance of allergy or food allergy or asthma. And the testimony that you’re going to hear from Thomas Silvera absolutely reinforces why we still have work to do. And until there are no more families that experience the loss of the Silvera family, we will continue to strive towards that goal and host events like today.
So, Thomas, please join me and share your story at this time.
Thomas Silvera: Hello everyone, my name is Thomas Silvera, I’m the co-founder and CEO of the Elijah-Alavi Foundation, and today I’m here to share my story and the impact that has been created around my life, my family’s life, and what we have done together in a community with many who suffered with food allergies and asthma.
So a little bit about myself, I was raised in a very poor neighborhood growing up, I was premature. I’m a fraternal twin. We were both preemies. I weighed about 3.5 pounds. And from that point on, I guess I kind of like created a snowball effect with my health in terms of suffering with seizures, having an undiagnosed respiratory disorder, and so forth. And as I got older living in these impoverished areas, the communities were definitely not that environmentally friendly, especially for those who have asthma. So I was in and out of hospitals all my life.
I also lived in the hospital from age 12 to 19. I graduated from the school there up in Valhalla (New York State). And just in my life, I’ve just been struggling with asthma and I’ve come to a point where I am able to manage it properly, especially working with the right specialists. But to fast forward to right now to give you a more in-depth idea of why I’m actually here today, it’s basically to talk about the patient focus and advocacy.
So on November 3, 2017, my youngest son, Elijah, was attending his daycare, which was less than a week when this happened. He was attending his daycare in New York City and an educator had given him a food that contained an allergen that he was severely allergic to. And although they knew about his severe allergies, they failed to mention it to my wife when they called her. They didn’t call 911. We had to rush him to the hospital. I was at work at the time when that happened and receiving that phone call, it’s not a phone call any parent wants to see.
I thought, you know, he’ll be fine, it’s just his asthma. I got to the hospital and I found out that he was in anaphylactic shock. And he was already far, far gone with multiple body systems affected. He had multiple rounds of epinephrine that didn’t save him.
And I didn’t know what to do from that point on. It became a mental challenge, not just for me, but for my wife and for my entire family. For his brother Sebastin, who sees him as his best friend and not knowing that he woke up and wasn’t able to see his brother again.
So that was one of the challenges that I had to deal with on a daily basis, because he still doesn’t know what really happened, even as many times as we explained to him what had happened and explained to him about grief. That is a very challenging thing, especially when it comes to a young child. And that’s one of the importance of why these panels and these discussions and getting legislation passed is so vital for the food allergy community and beyond.
From that point on, my wife Dina and I — we were just mentally drained emotionally and physically, and even with family and friends trying to aid and help us, trying to push through.
You know, it’s funny that my wife, she had mentioned something to me. She was like, ‘We need to do something. We need to do something fast to create some type of a change.’ So even in her grief, she did her research and everything, and she noticed that there was a lapse in the legislative system when it came to the policy in schools, and seeing that there wasn’t a policy in place for children in childcare.
So that’s where the wheels would turn. We reached out to several organizations for their assistance, and they jumped on board with no questions asked. And they helped us put something together that will put guidelines and protection for children in school. And with this, we worked hard and hand in hand with local politicians and with organizations. And we were able to move this legislation forward and swiftly. And we were able to put in mandates, not voluntary guidelines, in New York State. And we had this law which was passed in the Senate and in the Assembly in early that year and signed by the governor in September 2019.
So many have asked us, ‘How were you able to get this bill passed?’ It’s about passion, it’s about grassroots, it’s about persistence and never giving up, especially when it comes to advocacy and when it comes to something that you’re very passionate about, whether it’s legislation, whether something has to do with a restaurant, whether it has to do with school, your family or your friends. Being an advocate, being vigilant and what you want to instill in your community, in your family is so important because you’re providing the information that will keep your child or that person safe and then giving them that information to those family members or friends in the event they need to save their child or yourself from an anaphylactic event.
You know, the story I tell so many times to so many people, and no matter how many times I tell this story, it’s always like the first time I tell it because I get so choked up. You know, I’m living a life that my son could have lived, but it was taken away from him at such a young age, at the age of three.
So what we’re doing is to instill the legacy not just for ourselves, but also for the protection for young children now and in the future. And that’s why we have to continue fighting so hard, fighting hard to create change, fighting hard to create lasting impact with change, because with only one voice, we can make somewhat of a difference. But with many voices, we can make a world of difference.
And I think that’s one of the key focus of why we need to keep pushing and pushing and pushing. With the fact that the law was passed with so many people involved and lending their voices and creating that change. So that’s why that was able to get changed and getting these politicians and these Congress people and everyone to hear you, to hear you and hear that sounding heart that resonates within and how passionate you are that you want to keep your child safe and so many others, millions of people.
And that’s why with what we do as a family, we do it, we stand with everyone, we stand with everyone to create change. I want to be that voice for you. I want to send out that email. I want to send out that letter. That letter that you want to create change in restaurants, create change in schools, create change at a community center. That’s what the community is about, it’s helping each other.
And, you know, sometimes things can get hard. But it’s said the strongest swords are forged from heat. And I think with all that being said, being an advocate for yourself and just moving forward and just taking a chance to create change, it’s so vital and so important.
To be an advocate for change, we have to understand what steps that we need to take. You want to be passionate about it, so whatever it is that you’re interested in when it comes to food allergies or asthma, you have to hone that and do your research and put together something. So when you do approach the right people, the right legislators — and you want to make sure you get the right legislators involved, those who are involved in public health, those who are involved in child care and education, wherever they may be, but they have to be along those lines so they can get a better understanding of the message that you’re trying to convey to them. You don’t want to bring it to the legislator who only focuses on Greenpeace. You want them to focus on public health policies, and that’s where the biggest changes are. And then it’s getting others on board. So you have to do due diligence in terms of grassroots, getting other legislators to sponsor and work hand in hand with your local politicians, whether you’re a senator or you’re selling them, whichever representative that you’re working with. You have to be on top of them to make sure that what you’re looking to get done is actually getting done.
And I think that’s one of the key things. You can never leave it in the hands of the local politicians because they have so many of the projects that are working, so you’re always going to make sure you’re on top of them the same way you’re diligent and you’re vigilant and advocating for your child or yourself at restaurants or schools or anywhere else. That is the same way you have to be with your local officials. That’s why it’s important to stay the course, stay focused Never give up. Focus on where you get your information as well. Make sure that the reputable sites from so many sites like Allergy & Asthma Network with with available information that they can provide to you at a simple click.
It’s so important that we can’t let another child lost due to someone in the system, no one even knowing that they have the tools and the right information. And that’s why education is so key. Educating and creating awareness and training and proper training is so vital that we want to provide a safe space for children and for everyone that’s coming in. The educators being trained on top of knowing how to kind of swiftly children be a voice for themselves and being advocates for change. I know the youngest populations are very vulnerable. Some were very vocal, actually speak, and there were some that still are having their time and learning the process. So it’s like, how do we create that environment for your child to be safe?
That’s you have to be there. Make sure that your presence is known. Even when you’re not there, it’s important and. Again, as I’ve been saying this a lot, my son’s life was taken due to negligence. The life that he had and the life he would have had with my family changed the trajectory of how and where we do what we’re doing today. And I want you all to know that no matter what you do, never lose sight of your passion, your focus to create change, because it will make all the difference.
Stand your ground. Create a big grassroots movement, and just be patient, stay focused. We cannot lose another life, not a child’s life or anyone’s.
Tonya Winders: Thank you, Thomas. Again, our hearts go out to the Silvera family as they continue to live with grief and again, unfortunately, their story is not the only one that we’ve heard from here at the Network of those that have been lost due to allergies, asthma and related conditions over the last year.
We appreciate the way that you’ve taken the tragedy and used it to advance the policy in your state of New York. Elijah’s Law has already passed and now it’s going to spread throughout our country. And thank you for the work that you’re doing at state level and the federal level.
So, again, from the state capitals to Capitol Hill, it’s the voices of you, our advocates, that are being heard. We cannot say thank you enough to those of you who joined us today to continue to advance Allergy & Asthma Day Capitol Hill. As we go from this place today, we will prepare to have hundreds of visits with federal decision makers in the next 36 hours. We hope and pray that these decisions will continue to advance the policy priorities that we share at the outset of our time together today.
Again, we could not do this without each of you as individual advocates, whether you’re patients, healthcare professionals, industry partners or just concerned stakeholders within our community. We are so grateful for all that you’re doing to shape public policy and to advance the mission.
We do hope and pray that someday we’ll be able to end the needless death and suffering due to these conditions. But until that time, we’ll continue to work together to breathe better together. And so, again, thank you to each of you and to the supporters, and to our co-host, the American College of Allergy, Asthma & Immunology, and also to the staff of the Network for making this successful event. We wish you all well.