Asthma, allergy advocates to lobby for change on Capitol Hill May 4
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Clinicians from across the nation will meet with Congressional representatives and staff in person in Washington, D.C., and online on Wednesday, May 4, as part of Allergy & Asthma Day to advocate for legislation that supports patient care.
“Our goals of the day are to raise awareness and educate policymakers about the issues facing the more than 60 million Americans living with allergies, asthma and related conditions,” Tonya Winders, MBA, president and CEO of Allergy & Asthma Network, told Healio.
Targeted legislation
Patients, caregivers and other asthma advocates will join doctors in the annual event, which Allergy & Asthma Network has hosted for the past 26 years. They will rally under the theme of “Access, Affordability and Innovation” while promoting the Elijah E. Cummings (EEC) Family Asthma Act, the Safe Step Act and legislation targeting care for long COVID.
The EEC Family Asthma Act would provide $65 million to the CDC’s National Asthma Control Program to expand care for underserved communities with asthma across all 50 states and in Washington, D.C., and Puerto Rico.
Also, the bill would direct the CDC to collaborate with local and state health departments to educate the public about asthma and require states to develop plans for addressing asthma, particularly in communities bearing the highest asthma burdens.
According to Winders, the Safe Step Act would improve step therapy — when insurance companies require doctors and patients to try alternative medications before authorizing prescriptions for the physician’s first choice for treatment.
“It’s basically where an insurance company, a payer, requires patients to fill step A or B before they can get to the most appropriate treatment, step C,” Winders said. “The Safe Step Act would actually bring uniformity to that process across all 5,000 health plans in the U.S. and would also ensure that happens in a more clear, transparent and timely way.”
In addition to possibly repeating medications that may have previously failed or introducing dangerous side effects, Winders said, the step process could take months because payers have longer periods of time to respond and provide feedback to patients.
The Safe Step Act would require group health plans to establish clear processes that let physicians or patients request exemptions to step therapy. It also outlines five exceptions that insurers must grant when cases meet conditions such as previous medication failures, dangerous delays and harmful contraindications.
Further, health plans would be required to respond to exemption requests within 72 hours. When the patient’s life is at risk, they would be required to respond within 24 hours.
Addressing long COVID
In the Senate, the Comprehensive Access to Resources and Education (CARE) for Long COVID Act has been proposed, while the House is considering the Targeting Resources for Equitable Access to Treatment (TREAT) for Long COVID Act.
“We’re still learning so much about that particular condition,” Winders said.
“But for our community, those with compromised immune systems and lung health, it’s even more important because we are seeing that upwards of 15% of our community has had COVID and is still suffering with long COVID symptoms 6 months later,” she said.
The CARE for Long COVID Act would provide federal funding and incentives to study, understand and support individuals who are suffering from long COVID, according to Winders.
The act would centralize data about long COVID patient experiences, expand research, educate patients and providers alike about long COVID, facilitate interagency coordination and help people with long COVID access needed services.
The TREAT Long COVID Act would authorize up to $2 million in grants for health care providers including community centers to use to treat long COVID. It also would create and expand multidisciplinary long COVID clinics for medically underserved populations.
Further, the act would prioritize funding for health providers treating underserved populations and ensure treatment is not denied based on insurance coverage, date or method of diagnosis or previous hospitalization.
The act additionally would encourage medical training for long COVID clinic staff and require grantees to report on their activities, including patient evaluations.
“We aim to continue to drive the awareness of the importance of these chronic conditions and the impact and burden that they are having on our nation,” Winders said.
A day on the Hill
Between 50 and 60 members of the Allergy & Asthma Network will be at the Capitol on May 4 for in-person meetings with members of Congress and their staffs, while another 250 people will connect with legislators through phone calls and video conferences.
The Allergy & Asthma Network has spent the past 6 months scheduling these meetings, in addition to preparing its members, who hail from all 50 states.
“We do all the heavy lifting,” Winders said. “We train individuals on the key messages and talking points.”
Members attending virtual meetings will use the Soapbox platform to connect with legislators.
“We will send you a calendar invite for your visit, and then you just join with a link through that, and it pops you into the meeting with the member of Congress or their staff,” Winders said.
It is not too late for doctors, patients or other stakeholders to register for these virtual meetings by visiting the organization’s website.
The day also will feature a lunch briefing that in-person advocates can attend and virtual participants can livestream. Winders will be among the speakers, along with patients providing testimonials and advocating for the legislation.
“This lunch briefing is really to highlight our issues and to discuss the current state of allergy and asthma care in the U.S., given the post-pandemic world we’re living in,” Winders said.
The co-chairs of the Congressional Asthma and Allergy Caucus and cosponsors of the EEC Family Asthma Act, U.S. Reps. Debbie Dingell (D-MI) and Fred Upton (R-MI), also will speak during the luncheon, and American College of Allergy, Asthma and Immunology president Mark Corbett, MD, will present “The State of Asthma & Allergy Care in the United States.”
Winders noted that members of the Asthma and Allergy Foundation of America, the COPD Foundation, the American College of Chest Physicians, the American Academy of Allergy, Asthma & Immunology, and the Association of Asthma Educators will attend the event as well.
“We partner with patient advocacy groups and professional societies all the time in our advocacy efforts,” Winders said.
The past and future
Winders hopes that this year’s event is as successful as previous efforts, pointing to successes related to access to emergency medication.
“About 15 years ago, there was no way a student could self-carry their emergency albuterol or epinephrine at school. It had to be locked up in the school nurse’s office. We advocated to get a federal law and then subsequently to get all 50 states to allow students to do that,” Winders said.
“Then about 7 years ago, we advocated for a federal law that allows for emergency stocking of those medications,” she continued. “Any school or public entity now could actually stock these emergency medications so in the event of an emergency, they can administer them, even without a prescription.”
First-time and severe anaphylactic reactions can happen in restaurants, schools and other public spaces, so the legislation protects those entities and enables mechanisms that would let them offer those emergency medications, Winders said. Subsequently, she added, 49 out of 50 states have adopted similar legislation.
Looking ahead, the Allergy & Asthma Network will continue to keep stakeholders informed and lobby for improvements in care.
Winders invites doctors, patients and other stakeholders to visit the group’s website and sign up for alerts that will notify them about new federal and state legislation related to allergy and asthma care and provide opportunities to speak up.
“It’s really important that we get the word out and people realize how they can raise their individual voice to shape public policy,” she said.
References:
- Pressley, Beyer, Duckworth, colleagues unveil TREAT long COVID act to expand access to treatment. https://beyer.house.gov/news/documentsingle.aspx?DocumentID=5490. Posted April 7, 2022. Accessed April 12, 2022.
- HR 2162 – Safe Step Act. https://www.congress.gov/bill/117th-congress/house-bill/2163?s=1&r=3. Updated March 23, 2021. Accessed April 12, 2022.
- HR 5230 – Elijah E. Cummings Family Asthma Act. https://www.congress.gov/bill/116th-congress/house-bill/5230/text?r=2&s=1. Updated November 21, 2019. Accessed April 13, 2022.
For more information:
Tonya Winders, MBA, can be reached at twinders@allergyasthmanetwork.org.