AADCH Patient Stories Highlight Need for Greater Education, Awareness and Access
By Gary Fitzgerald
Tammy and Corey Bailey told the heartbreaking story of their daughter Sydney, who passed away last year due to an asthma flare. Amanda Eisen shared the story of her daughter Julia, who has a severe dairy allergy and experienced an anaphylactic reaction at a Disney World restaurant.
The Baileys and Eisens were among the families, patient advocates and healthcare professionals at the 20th annual Allergy & Asthma Day Capitol Hill (AADCH) on Thursday, May 4, hosted by Allergy & Asthma Network in Washington, D.C.
AADCH included advocacy visits with members of Congress on both sides of the political aisle, as well as a Congressional Lunch Briefing in the Rayburn House Office Building, just steps from the U.S. Capitol Building. All together, Allergy & Asthma Network advocates recorded more than 100 visits with members of Congress and their legislative staff at AADCH.
Both the Baileys and Eisens attended AADCH to raise awareness of asthma and allergies and stress the need for education.
The Baileys, from Greenville, South Carolina, never knew their daughter Sydney, a junior at the University of South Carolina at the time of her passing, had asthma. She had eczema and severe environmental allergies, but was never diagnosed with asthma.
“If I had known, I would have done whatever I needed to do,” Tammy said. “Now I want to be an advocate for Sydney in her memory, so that no other parent has to endure this.”
After detailing her daughter Julia’s ordeal at the Disney World restaurant, Amanda said: “We can be considered one of the lucky ones because we had access to lifesaving medications and a team of doctors. Not everyone is so fortunate. Too many people are simply unaware how significant and consuming food allergies are. There is simply not enough education, awareness and access to care.”
Asthma and allergy patient stories have long been a part of AADCH – they are often critical in influencing legislators on healthcare policy.
“We host AADCH every year in early May to reinforce our message so it continues to ring true in the eyes and ears of our federal decision makers – and that’s to end the needless death and suffering due to asthma, allergies and related conditions,” said Tonya Winders, President and CEO of Allergy & Asthma Network. “It takes all of us working together, at the federal and local level, to ensure no more lives are needlessly lost.”
More than 24+ million Americans with asthma and 50+ million have allergies. Approximately 10 people a day die from asthma in the United States.
Reps. Eliot Engel (D-NY), Gregg Harper (R-MS) and Carol Shea-Porter (D-NH), co-chairs for the Congressional Asthma & Allergy Caucus, shared their thoughts with AADCH attendees in written statements.
“It is clear more work is needed to lift the burdens created by asthma and allergies,” Rep. Engel said. “That is why I am so heartened by your efforts. By sharing patient stories and boosting awareness around asthma and allergies, you’re playing a key role in this effort.”
Lunch briefing attendees also heard from Allen Meadows, MD, Advocacy Council Chair with the American College of Allergy, Asthma & Immunology, who provided an overview of the state of asthma and allergies in the United States; and James P. Kiley, PhD, of the National Heart, Lung, and Blood Institute (NHLBI), who provided an update on revised asthma guidelines and discussed new, innovative treatments on the horizon.
“Just for asthma alone, the direct and indirect costs for asthma come to $56 billion – that’s a big number even here on Capitol Hill,” Dr. Meadows said. “This is real money costing our society, and in many cases needlessly costing our society. And we still have 3,600 people who die from asthma every year, and needlessly dying.
“We need to have access to albuterol and epinephrine in schools, we need to have treatment plans at schools. One in five people cannot afford their medications – it’s something that is becoming increasingly common and it’s a real challenge in taking care of patients on a day-to-day basis.”
- Ensuring Access to Care
Rep. Engel mentioned the importance of funding for the Children’s Health Insurance Program (CHIP) and Medicaid, which together provide more than 40 percent of children in the United States with health insurance coverage, making both of the programs combined the largest insurer of U.S. children.
“Asthma and allergies take a toll on our nation’s most vulnerable populations, including children,” Rep. Engel said. “That’s why we must protect and strengthen the programs that serve those populations. Medicaid and CHIP serve as a lifeline for families who otherwise might not be able to afford health insurance.”
The Network supports CHIP funding through 2019 and maintaining appropriate coverage for individuals who rely on Medicaid.
- Asthma Management in Schools
Two days prior to AADCH, news arrived that Rep. Phil Roe, MD (R-TN) and House Democratic Whip Steny Hoyer (D-MD) introduced the School-Based Respiratory Health Management Act (HR 2285), legislation that encourages states to help ensure students with asthma have assistance at school with managing their disease.
The legislation would give states priority in an asthma grants program if they implement stock albuterol and establish standardized asthma action plans, including training personnel to administer medication, for a safe and healthy learning environment.
- Expansion of Telehealth Services
Live video conferencing with doctors and other healthcare providers can be an effective way to provide education and respiratory therapy for people with asthma and allergies. It’s particularly true in rural areas, Rep. Harper says.
“One of my priorities since being elected to Congress has been expanding access to telehealth,” Rep. Harper said. “Especially in rural areas, access to primary care can be scarce. Individuals suffering from asthma and allergies would be well served by an expansion of telehealth services.”
- Step Therapy
Also known as “Fail First” policies, Step Therapy insurance policies require the least expensive drug to be prescribed to a patient first, rather than medication originally prescribed by the doctor. This practice can result in negative consequences for the patient, potentially delaying the most appropriate prescribed treatment.
“It stifles innovation,” Winders said. “We have great treatments and medications for severe asthma, but if patients can’t get immediate access to them, it doesn’t really help.”
- Research Funding
Federal programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC) and Environmental Protection Agency (EPA) support asthma and allergy education and fund research. The Network supports continued funding at $29 million for CDC’s National Asthma Control Program; EPA’s initiatives that address indoor and outdoor environmental factors that trigger asthma; and NIH research programs for allergy, asthma and related conditions.
- USP Pharmaceutical Compounding Revised Guidelines
More than 4,200 allergists nationally prepare and administer immunotherapy extracts to their patients. U.S. Pharmacopeia (USP) is proposing a change to Chapter 797 on sterile compounding that would remove special rules allowing allergists to prepare extracts in their own office. This could result in millions losing access to immunotherapy. The special exception rules for allergen immunotherapy extracts have been in place for decades and are consistent with prior Congressional action supporting the special rules. The Network supports maintaining the current USP rules for allergen extracts.
On Thursday evening, the Network hosted a reception at the Washington Court Hotel on Capitol Hill. The EPA presented its annual EPA National Environmental Leadership Awards in Asthma Management to three programs:
1. Children’s Hospital of Richmond at Virginia Commonwealth University: The “You Can Control Asthma Now” (UCAN) community asthma program, established in 2015, helps children in Richmond, Virginia, where both asthma and poverty rates are disproportionately high. The program served more than 344 patients using a family-focused approach that includes comprehensive care from a pulmonologist, nurse asthma educator and social worker.
2. Esperanza Community Housing Corporation: Serving communities in South Los Angeles, Esperanza is a nationwide leader in addressing health disparities and providing culturally accessible prevention, health education and advocacy services. Esperanza established the Healthy Breathing Program which uses a Healthy Homes approach to focus on repeated in-home visits, including identification of asthma triggers and management of asthma flares in the home, and a year-long patient evaluation.
3. Health Care Service Corporation (HCSC): In partnership with the American Lung Association of the Upper Midwest (ALAUM), Health Care Service Corporation, the nation’s largest customer-owned health insurer, implemented comprehensive, community-based asthma quality improvement programs in more than 120 health care clinics in Illinois, Montana, New Mexico, Oklahoma and Texas. It served an estimated 435,545 people, including low-income, Latino and Native American populations. They provided home assessments, asthma education and allergen-reducing remediation projects.
AADCH 2017 Sponsors
American College of Allergy, Asthma & Immunology
Lupin Pharmaceuticals, Inc.
Mylan Specialty L.P.