Case study of boy with fire ant allergy illustrates barriers in access to immunotherapy
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Key takeaways:
- Lack of transportation, childcare and time off from work may impede immunotherapy.
- Coalitions to solve these problems may include physicians, community partners, patient advocates and lawmakers.
The obstacles that a boy with a fire ant allergy faced in accessing immunotherapy exemplify barriers to care in underserved populations, according to a case study published in The Journal of Allergy and Clinical Immunology: In Practice.
By building coalitions of relevant stakeholders, physicians may be able to address these barriers and improve outcomes, John Carlson, MD, pediatric allergy and immunology specialist at Ochsner Health System in New Orleans, and colleagues wrote.
“The American Academy of Allergy, Asthma and Immunology’s DEI committee, of which I am a member, asked for cases that illustrate the impact of social determinants of health on our patients,” Carlson told Healio.
“We had just been working with this family to try to overcome barriers to care. After asking the family if they would be OK with us describing what happened, they agreed, hoping it would raise awareness for others in similar circumstances,” he continued.
Barriers to care
The boy, aged 4 years, lived in New Orleans when he was stung by ants and immediately developed diffuse urticaria, angioedema and flushing, followed by stridor. After arriving at the ED, he quickly improved with 0.01 mg/kg of intramuscular epinephrine.
Also, the boy had a tryptase level of 20 ng/L, with 5.1 ng/mL in repeat testing during follow-up in the allergy clinic. When testing indicated 23 kU/L of serum-specific IgE for red imported fire ant — habitats for which expand westward by about 120 miles each year —physicians recommended venom immunotherapy.
Although the family understood the risks and benefits of immunotherapy, they expressed uncertainty about their ability to get to the clinic reliably due to transportation barriers, a lack of childcare for the boy’s siblings and difficulties in taking time off from work including a lack of paid sick leave.
Also, the family’s primary language was not English, but telemedicine, medical interpreters and a social worker who spoke Spanish helped them understand their options for transportation and other services.
Clinicians investigated alternative venues that would provide immunotherapy injections, but the barriers in accessing primary care were as challenging as the barriers in accessing the allergy clinic.
The family found that adherence to maintenance injections would have been unfeasible even with the use of rush protocols and spacing injections to reduce the number of necessary visits.
As a result, the family did not pursue immunotherapy, although the boy carries a pair of epinephrine autoinjectors. He has avoided additional stings and has kept his autoinjectors with him as well.
“Difficulty accessing the longitudinal medical care necessary for managing chronic medical conditions is so common, particularly in states like Louisiana where poverty is common,” Carlson said.
Carlson said that he and his team have made a lot of progress in reaching patients via telemedicine and other strategies, but they do not work well for all of their patients, such as those who need regular in-person visits for allergy shots.
“We can work through the logistical problems that most families face, but a few times per year, we treat a family where the number of barriers is so high that we can’t solve them all,” he said.
Care is vital in improving outcomes and quality of life for these patients, Carson continued.
“Until the patient is desensitized, the family is very anxious knowing that any sting could quickly cause a fatal allergic reaction,” he said. “We have adult patients with venom allergy that have so much anxiety as well. Once desensitized, they can do all of their normal activities without worrying.”
Overcoming obstacles
The authors noted that telemedicine and interpreters are not enough to ensure access to immunotherapy, as the health system alone cannot resolve issues such as a lack of paid sick leave or transportation among patients.
Instead, the authors advised, broad coalitions comprising community partners, patient advocacy groups, physicians and lawmakers would be most effective in mitigating these barriers to care, with physician involvement often catalyzed by specific experiences with patients.
Beyond legislative advocacy, the authors continued, physicians can focus on building coalitions in addressing the problems of underserved families with partnerships that provide services within homes, schools and communities.
“The key to coalition building is to talk with as many people as you can. Keep bringing the problem up locally, regionally and nationally. Others have seen the problem and are also thinking about how to solve it,” Carlson said.
“As an example, I’ve just been in touch with an allergist working with the military, and she has some really exciting data that might be helpful in reducing the number of visits needed for patients with fire ant venom allergy,” he continued.
Marginalized communities also need investment in mitigating the effects of exposures on child health, the authors continued. For example, they wrote, a lack of parks and tree cover in communities that also may be prone to flooding may increase exposure to fire ants.
Through dialogue with families, schools, clinics and other stakeholders, the authors wrote, coalitions may be able to determine the best options for improving access to care and for determining what resources are needed for achieving more equitable outcomes.
Additionally, the authors wrote, despite the prolonged time that coalition building and system-level changes require, they enhance the sustainability of these improvements, which then would be available for other patients in need.
In the meanwhile, the authors offered advice for physicians who want to improve access to immunotherapy for patients.
First, they encouraged physicians to review the patient’s capacity for long-term adherence before initiating treatment.
Second, they advised physicians to explore the resources that could be brought to support patients experiencing barriers such as consultation with social workers and referrals to existing community resources in the patient’s native language.
Finally, they reminded physicians that patients with poverty face multiple barriers, so solutions that only address a single problem might not be effective. Coalition building, the authors continued, would be more effective in solving system-level problems.
Carlson said that he and his team are committed to improving care via these collaborations.
“We are very interested in advocacy and do publish our approaches from time to time,” he said. “Our goal is to continue having conversations that bring people together to solve problems.”
Perspective
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These problems are not specific to venom allergy per se. We see this with various treatment options. The one thing about venom allergy shots that is unique is that they must be done in a medical setting due to the possibility of anaphylaxis, or severe allergic reaction, to the shot. (After all, we are slowly giving the patient the substance to which they are allergic.) In addition, these shots can lead to protection from a life-threatening allergy. Thus, because of that, they are a little different than other therapies that can be done and monitored remotely.
When we encounter similar obstacles in our practice, we try to arrange for patients to get these shots at a local medical facility, which can be a local family practice, pediatrician, internist or even a walk-in clinic. We provide the clinic with very explicit instructions on how to progress through the allergy shots and side effects to monitor.
Solutions to problems like this are always needed. I am not sure personally what a coalition will do, but I would be interested to hear the thoughts of others. Obviously, this is a systemic issue that, once again, is not unique to venom allergy. It also is a very complex issue. Solving such a problem will take a village and not something that will be able to be addressed in a one-liner.
Perspective
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These obstacles in accessing treatment for venom allergies are likely an issue in all types of medical care. Allergen immunotherapy can be a life-changing treatment and, for a potentially life-threatening allergy such as venom, is the closest we come to a cure. Immunotherapy treatment is very time-intensive and can be logistically challenging. For those with access issues, childcare issues and work-related obstacles, it can be even more challenging.
We have allowed immunotherapy to be given at sites outside our clinic, such as with a primary care provider, to make it more accessible. Due to the potential adverse reactions, it is not standard of care to allow immunotherapy to be given at home. The authors comment that rush or ultra-rush protocols can allow a patient to reach maintenance dose sooner, but as revealed by Daniel R. More, MD, and colleagues in a 2002 study, patients who received a conventional schedule of allergen immunotherapy were more compliant than those on a rush schedule, 80% vs. 48.4% (P < 0.001).
To improve access to immunotherapy for these underserved populations, we should bring the education and treatment to the patient and the family, whether it be in the school or primary care office, and make it more accessible. I also agree with the authors in their calls for coalitions to address these issues at a system level. System-level change is needed to address social determinants of health.
As noted above, we should try to increase education in this population and among providers caring for this population and get specialists into these underserved areas.
Reference:
More D, et al. Ann Allergy Asthma Immunol. 2002;doi:10.1016/S1081-1206(10)62370-8.
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