By Gary Fitzgerald
With so many novel therapies and innovative treatments in asthma therapy in recent years – and more on the horizon – it remains disturbing that 10 Americans die from the disease every day.
And up to 200 people a year die from anaphylaxis, a severe allergic reaction often the result of eating a food allergen or getting stung by an insect.
How to ensure no more lives are lost to asthma and allergies? On May 9, more than 100 advocates with Allergy & Asthma Network, including patients, families and healthcare professionals, canvassed Capitol Hill to talk with legislators and their staff about ensuring access to affordable, high-quality care and continuing federal asthma and allergy research and support programs.
It was part of the 21st annual Allergy & Asthma Day Capitol Hill (AADCH), the Network’s annual advocacy day.
“These are conditions we know how to diagnose and treat, and there is so much more we can do for patients than we could do just three or four years ago,” says Tonya Winders, President and CEO of Allergy & Asthma Network. “We are here to raise awareness and certainly make the point that policy changes can make a real difference in our community.”
Izaiah’s Story
Drushane Teehee and her family, from Tahlequah in Cherokee County, Oklahoma, shared the story of Izaiah, Drushane’s 17-year-old son. Izaiah was diagnosed with asthma in 2009 but in recent years his conditioned worsened.
Drushane says Izaiah did not receive consistent, quality asthma care from his doctors. He was treated primarily with montelukast, which has a higher risk of side effects – including mood swings and depression – than other asthma drugs. Izaiah died by suicide on May 6, 2017.
“I don’t want another family to have to go through what we went through,” Drushane says.
She and her family met with Rep. Markwayne Mullin (R-OK) and Sen. James Inhofe (R-OK), among others, and offered powerful testimony at the annual AADCH Congressional Lunch Briefing.
Luca’s Story
During AADCH, 10-year-old Luca Ingrassia and his mom Francine of Long Island met with New York legislators and staff, including Sens. Charles Schumer (D-NY) and Kirstin Gillibrand (D-NY).
Luca shared his story of experiencing anaphylaxis after eating a cashew on a flight from Aruba to Long Island. The airline did not have epinephrine auto-injectors available, but a nurse on the flight provided her own – and saved Luca’s life.
Now Luca is an advocate for legislation requiring epinephrine auto-injectors on all airlines. “It’s important so that something like what happened to me never happens again,” he says. “If a 10-year-old knows the risks, all airlines should, too.”
Congress is currently considering the FAA Reauthorization Act of 2018, or HR-4, which provides an opportunity for placement of epinephrine auto-injectors in airline medical kits. The bill passed the U.S. House of Representatives and is pending in the U.S. Senate.
Legislators’ Remarks at Lunch Briefing
Speaking to 100+ patients and families, advocates, healthcare professionals and legislative staff, Rep. Phil Roe, MD (R-TN) said he was optimistic the Congress would pass the School-Based Respiratory Health Management Act, or HR-2285, possibly before the end of summer this year.
The legislation would give grants preference to those states that implement comprehensive school-based asthma and allergy management programs that include Asthma Action Plans and training for school staff to administer asthma medications in an emergency.
The bill would better equip schools to help students manage their disease, Rep. Roe says.
Rep. Eliot Engel (D-NY), Congressional Asthma & Allergy Caucus co-chair, sent a statement saying, “Abut 84,000 children have asthma in New York City, and African-Americans and Latinos are disproportionately affected. These populations are often not able to afford their medications. As co-chair, I’m grateful to all who have taken the time to learn about asthma and allergies and raise awareness about living with the condition.”
Read more on Allergy & Asthma Network’s AADCH policy priorities.
Interventions to Address Asthma Disparities
One of Allergy & Asthma Network’s AADCH policy priorities is asthma disparities and improving health equity. Asthma crosses all racial, ethnic and socioeconomic groups, but it is more common among African-American, Hispanic and Native American populations, particularly those in poor, urban areas.
Randall Brown, MD, director of asthma programs at the Center for Managing Chronic Disease for the University of Michigan School of Public Health, and Bruce Bender, PhD, head of the Division of Pediatric Behavioral Health and co-director of the Center for Health Promotion at National Jewish Health, both addressed asthma disparities at the Congressional Lunch Briefing.
“Even with all of our medicines, we can do better,” Dr. Brown says. “Our response to asthma from a national public health standpoint is that we have ‘lifted boats,’ but we still have left some behind … The answer is to be more targeted with our therapeutic approaches, determine what’s best for our communities, and involve those most at risk.”
In Native American populations, asthma-related deaths are 20% higher than Caucasians, with the highest rates in the Southwest, Dr. Bender says.
Dr. Bender helped develop the Community Asthma Program at National Jewish Health and received a grant from the National Institutes of Health to implement it. The program is charged with improving asthma health in the Navajo Nation in the Southwest by engaging with the community, assessing their health needs and developing a plan.
“Our goal is to come in and work with Native Americans,” Dr. Bender says. “We want to improve access to quality healthcare in Native American populations, to ensure it is provided by healthcare professionals who are knowledgeable about evidence-based treatments and the culture, including understanding the role of traditional healers.”
Innovations Keep Coming
Bradley Chipps, MD, President of the American College of Allergy, Asthma & Immunology (ACAAI), provided updates on the many innovative asthma therapies available today and on the horizon.
“Innovative therapies include more targeted treatments such as biologics, immunotherapy and shared decision making between doctor and patient,” Dr. Chipps says. “We also established a paradigm of step-up care for severe asthma with the Asthma Yardstick,” Dr. Chipps says. The Asthma Yardstick was published in 2017.
A new pediatric version of the Asthma Yardstick is scheduled to be published this year, he adds. And soon doctors will embark on developing guidelines for step-down severe asthma care.
EPA Award Winners
AADCH concluded with the Network hosting a reception at the Kimpton Hotel Palomar in Washington, D.C. The U.S. Environmental Protection Agency presented its annual “EPA National Environmental Leadership Awards in Asthma Management” to two programs:
- The Zuckerberg San Francisco General Hospital Pediatric Asthma and Allergy Clinic (PAAC)is a comprehensive asthma management program built upon a medical-social model of subspecialty care. At the heart of the program is the community health worker who acts as a powerful patient advocate and liaison between the community and the clinic. The patient population PAAC serves is approximately 62% Latino, 18% African-American and 12% Asian. During home visits, culturally-sensitive community health workers address common environmental asthma triggers. PAAC also works with schools and daycare centers to reduce indoor triggers and improve communication between families and schools regarding asthma treatment plans. PAAC’s efforts have paid off, yielding a 40% reduction in asthma hospitalizations.
- The Community Asthma Prevention Program (CAPP) at Children’s Hospital of Philadelphiaprovides asthma self-management education in all parts of a child’s life, including home, community, school, and health care environments. CAPP’s community health workers are recruited from the very community in which they serve. Community Health Workers are primarily African American or Hispanic, and they are among only a few nationwide to be reimbursed by health insurance companies for home visits. CAPP saw a 62% reduction in asthma-related emergency visits and a 70% reduction in hospitalizations.
Thank You to AADCH Sponsors
American College of Allergy, Asthma & Immunology
AstraZeneca
Boehringer Ingelheim
CHEST Foundation
Genentech
GlaxoSmithKline
Lupin Pharmaceuticals, Inc.
Mylan Specialty L.P.
Novartis
Regeneron
Sanofi Genzyme
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