In June of 2024, we as pediatric resident physicians put our advocacy training into action to ensure accessibility of a critical asthma medication for DC children. As residents, we are no strangers to taking care of children with asthma – a chronic respiratory illness which causes cough, wheezing and breathing emergencies. Unfortunately, Washington D.C. remains a major asthma hotspot, leading the nation in asthma-related mortality (1). Approximately 16% of D.C.’s children will have a diagnosis of asthma at some point in childhood (2) with the highest rates disproportionately concentrated in Wards 7 and 8 (3) where children are 20 times more likely to end up in the emergency room for asthma than children in wealthier ward 3 (4).

Some children with asthma only need a “rescue inhaler” as needed, and some need a daily controller medication that can be an inhaler or an oral medication. Fluticasone propionate HFA (brand name Flovent), an inhaled corticosteroid metered dose inhaler (MDI) is the most commonly prescribed daily controller medication for children with asthma. It has consistently been shown to reduce asthma symptoms and reduce frequency of hospitalizations and emergency room visits (5).

In January of 2024, under the American Rescue Plan Act, the Medicaid rebate cap was discontinued, which increased the rebate amount Medicaid could receive from pharmaceutical companies if drug prices increased faster than inflation. In response to this change, to skirt potential profit loss, GlaxoSmithKline (GSK) discontinued brand name Flovent, and opted to instead produce an “authorized generic,” which would not be subject to these larger rebates (6). On January 1st, 2024, during peak respiratory virus season when asthma exacerbations are frequent, Flovent was discontinued, leaving many children without access to their medication (7).

As many insurance companies covered the brand name Flovent as the only daily inhaler option for children, the discontinuation of Flovent forced families to scramble to access a lifesaving preventive medication. Their options were to either pay out of pocket, switch to a dry powder inhaler that requires holding and inhaling in a way that is much more challenging for children, or switch to a nebulizer treatment, which would require purchase of new machinery and slower treatment administration.

Although many private insurance companies that provide coverage for DC, Maryland, and Virginia children were proactive in updating their formularies, DC Medicaid faced challenges in updating coverage, leaving many children with complex medical needs and children in foster care without access to this medication.

During our 2^nd year LAUnCH Track Advocacy Rotation, we met with a representative from the DC Department of Health Care Finance (DHCF) to rectify this gap in care. With guidance and support from Children’s National Government Affairs, we advocated for specifying generic Fluticasone Propionate HFA as a preferred medication without a prior authorization, and also encouraged contingency plans for when medications are discontinued or in shortage in order to prevent gaps in medication access. As a result of our advocacy with DHCF, they formally changed policy and now list generic Fluticasone propionate HFA as a preferred medication.

Advocacy is essential when policies lag behind the needs of children, and it is often our most vulnerable patients who feel the brunt of these delayed policy changes. We utilized patient narrative in our advocacy efforts with DHCF to bridge policies on paper with our real-life experiences as providers.

Manny* is a 4-year-old child with severe asthma who unfortunately spent one Saturday in a hallway bed waiting to be seen in the Children’s National emergency department (ED).

Manny had been taking Flovent reliably for several years to control his asthma. However, when he needed a refill earlier in the week, his mother was told by their local pharmacy that it was no longer covered by their insurance. Over the next 48 hours while mom was trying to figure out a way to get the medication, he started wheezing. Before waiting for him to develop the severe difficulty breathing that previously left him with a prolonged intensive care stay and permanent brain injury, Manny’s mother brought him to the ED, where we discovered that the discontinuation of his inhaler, brand name Flovent, was the culprit for his lack of access to medication. After many hours of waiting in the ED, we were able to get a workaround with social work to cover the cost of one fluticasone inhaler.

Manny represents so many children suffering from asthma in Washington, DC. Although as health care providers we cannot always control insurance coverage and adjacent policy changes that negatively impact our patients, we have the power and the duty to continually advocate and elevate our patients’ stories to those who do have the power to make these necessary changes. Now, with increased access to asthma controller therapy, children can breathe a bit better.

* To ensure patient confidentiality, patient’s identifying factors have been changed for this article.

Works Cited:

1. Centers for Disease Control and Prevention, Asthma Mortality by State (2021). Retrieved June 8, 2024, from https://www.cdc.gov/asthma/most_recent_data_states.htm
2. Centers for Disease Control and Prevention, 2021 Child Asthma Data: Prevalence Tables (2023). Retrieved June 8, 2024, from https://www.cdc.gov/asthma/brfss/2021/child/tableL1.html
3. IMPACT DC. (2017). Asthma Surveillance in DC Emergency Departments and Hospitals. Retrieved June 8, 2024, from https://edge.sitecorecloud.io/cnh-e6162ccc/media/cnhs-site/files/departments/impactdc/asthma-surveillance-in-dc.pdf
4. D.C.’s Children’s Law Center. (n.d.). (rep.). BUILD HEALTH DC. Retrieved 2024, from https://childrenslawcenter.org/wp-content/uploads/2021/07/CLC_BUILD_Brochure_IndvPgs.pdf.
5. Adams RJ, Fuhlbrigge A, Finkelstein JA, Lozano P, Livingston JM, Weiss KB, Weiss ST. Impact of inhaled antiinflammatory therapy on hospitalization and emergency department visits for children with asthma. Pediatrics. 2001 Apr;107(4):706-11. doi: 10.1542/peds.107.4.706. PMID: 11335748.
6. Williams, E. What are the implications of the recent elimination of the medicaid prescription drug rebate cap? Kaiser Family Foundation. Published online 2024. Accessed 2024. https://www.kff.org/policy-watch/what-are-the-implications-of-the-recent-elimination-of-the-medicaid-prescription-drug-rebate-cap/
7. Cohen J. New Medicaid Rebate Rule Causes Problems For Asthma Patients On Flovent. Forbes. Published online 2024. Accessed 2024. https://www.forbes.com/sites/joshuacohen/2024/01/03/new-medicaid-rebate-rule-causes-problems-for-asthma-patients-on-flovent/