Urging Congress to Ensure Patient Safety and Education
By Gary Fitzgerald
U.S. Rep. Carol Shea-Porter (D-NH) envisions a day when people say, “There once was a disease called asthma.” She sees a time in the not-too-distant future when parents tell kids, “People actually used to die from eating peanut butter.”
What will it take to reach that day? A renewed emphasis on medical research, patient education, high-quality and ethical care, federal and community programs – and most of all, a commitment to patient safety.
One day “we’ll get there,” says Shea-Porter, who is the mother of two sons with asthma and co-chair of the Congressional Allergy and Asthma Caucus.
Shea-Porter was among several members of Congress, physicians, public health advocates, patients and families who addressed the 17th annual Allergy & Asthma Day Capitol Hill (AADCH), hosted by Allergy & Asthma Network Mothers of Asthmatics (AANMA) on May 7. U.S. Reps. Phil Roe, MD (R-TN) and Joe Barton (R-TX) also spoke at AADCH.
“A person whose asthma is well controlled goes to work or school, exercises, and participates fully in life,” says Tonya Winders, AANMA president and CEO. “But managing a chronic illness is complicated, expensive and sometimes treated in ways not in the best interest of those with asthma and allergies. At AADCH, we’ve highlighted hot-button issues and challenges that asthma and allergy patients face every day.”
The issues included:
Deception and Fraud In Allergy Care
Allergy testing and immunotherapy schemes in primary care offices across the country expose patients and families to substandard care as well as fraud and abuse of insurance payers. The deceptive practices of so-called “certified allergy technicians” endanger those with allergy and asthma and the community at large with false diagnosis and improper treatment for patients who seek symptom relief.
During AADCH, advocates canvassed the halls of Congress and asked Representatives to sign a letter asking the Federal Trade Commission and other regulatory agencies to investigate deceptive practices thousands are exposed to every day.
AANMA notified attorneys general in all 50 states about deception and fraud in allergy care services and issued a Consumer Alert in all 50 states.
Switching Prescription Medications to OTC
FDA is considering shifting prescription asthma and life-threatening allergy medications to over-the-counter (OTC), but “asthma is a not a do-it-yourself disease,” Winders says. “Self-diagnosis and self-treatment make an already dangerous illness more unsafe for millions with asthma and allergies. OTC implies little risk, when about 10 people a day die from asthma.”
AANMA asked Congress to exclude these medications from an OTC switch. By doing so, Congress reinforces the need for chronic disease management to be based on the physician-patient relationship and protects patients from dangerous, unintended consequences of delayed access to quality care.
Federal Asthma Programs
The Centers for Disease Control and Prevention’s National Asthma Control Program and the Environmental Protection Agency’s Indoor Air Quality program help
asthma and allergy patients learn how to better control allergens and irritants that trigger to symptoms, particularly in the home and in schools. Continued funding for these programs is critical.
“Asthma is not a rare disease anymore, it’s really a common disease,” says Judy Qualters, PhD, director of the CDC’s Division of Environmental Hazards and Health Effects. “Prevalence is increasing. For some patients, guidelines-based care and basic asthma education from a medical provider works. But for others, it requires medical management, home-based education and trigger reductions.”
The Network and patients urged Congress to continue grant funding for federal programs and graduate medical education to grow the profession of asthma and allergy specialists.
In 2013, the Food and Drug Administration (FDA) issued draft guidance permitting new generic inhalers to enter the market without a dose counter. In addition, FDA does not currently require dose counters on proposed OTC inhalers.
In meetings with members of Congress and their staff during AADCH, advocates reinforced The Network’s position that dose counters – which record and display the number of “puffs” remaining in the canister – should be required on all inhalers.
Asthma and allergies are equal opportunity diseases, affecting people from all walks of life and both sides of the aisle. More than 26 million Americans are impacted by asthma and 50 million have allergies.
Shea-Porter called asthma a “true affliction in my family,” one that has been life-threatening at times. U.S. Rep. Steny Hoyer (D-MD), who met with The Network advocates during a visit to his office on May 6, has a grandchild with food allergies. President Obama’s daughter Malia has a peanut allergy.
As part of AADCH, The Network presented special awards to Hoyer and Dr. Roe for co-sponsoring the School Access to Emergency Epinephrine Act, signed into law last November by President Obama. The legislation encourages states to enact laws allowing or requiring schools to stock and administer supplies of epinephrine auto-injectors in case of anaphylaxis, a life-threatening allergic reaction.
“This was an easy bill for me to support and it passed overwhelmingly,” Dr. Roe said. “Anaphylaxis is something that if it’s not treated immediately can be catastrophic.”
“We did everything right in terms of managing Benjamin’s asthma,” Cristin said in heartfelt remarks at AADCH. “Doctors and asthma specialists told us, ‘We don’t know why this happened.’ We need to continue funding for asthma research so that we can make sure this never happens again.”
Danielle Joe of Detroit joined AANMA on visits to members of Congress, telling the story of her 10-year-old son Xavier, who passed away in 2012 due to an asthma attack. She encouraged lawmakers to expand treatment options for asthma attacks to include epinephrine auto-injectors.
Michael Foggs, MD
“In the inner city, emergency departments are often used as outpatient clinic facilities, and this is because many people think that asthma is an event – they don’t understand that asthma is a chronic inflammatory disease of the airways,” Dr. Foggs says. “They frequently come to the office and say, ‘Doctor, my asthma is back.’ And of course my response is, ‘Where did it go in the first place?’ And then dialogue transpires to help them understand what they need to do to manage their condition.”
Janet Phoenix, MD, MPH, manager of Asthma and Health Education Services for Breathe DC, discussed the Breathe Easy Home Improvement Project, a home visitation program that helps homeowners identify environmental asthma triggers.
“We focus on reducing the allergens and irritants, such as dust mites, pets, mice, cockroaches and mold, that really make the disease a lot worse,” Dr. Phoenix says. “I see a lot of families living in distressed housing, or subsidized housing that is poorly maintained. So we conduct home interventions and provide strategies to reduce factors that can lead to an asthma attack.”
Based in Washington, D.C., Breathe DC is also active in raising awareness of cigarette smoking and its impact on asthma.
“Sixty-seven percent of children with severe asthma in Washington, D.C., are living with a smoker,” Dr. Phoenix says. “So even if a child is doing everything right to manage asthma, if there’s a smoker in the home, then the child will continue to have problems.”
Advocates In Action: Help make “that day” Rep. Shea-Porter envisioned a reality. Contact your members of Congress and tell them patient safety for all illnesses must be a priority.
• Locate your U.S. Senators http://www.senate.gov/senators/contact/
• Find your U.S. Representatives http://www.house.gov/representatives/find/
THANK YOU TO AADCH SPONSORS:
American Academy of Allergy, Asthma & Immunology
American College of Allergy, Asthma & Immunology
Mylan Specialty L.P.
Thank You to Our Congressional Allergy & Asthma Caucus Co-Chairs:
Rep. Bill Cassidy, MD (R-LA)
Rep. Eliot Engel (D-NY)
Rep. Carol Shea-Porter (D-NH)