HAE exacerbations secondary to insurance barriers: A common, yet avoidable, trigger

Hereditary angioedema, or HAE, is an uncommon, yet important blood disorder characterized by episodes of swelling that can be potentially life-threatening.

Patients experience subcutaneous swelling of lips, throat, hands, feet, genitals and abdomen, most commonly. The attacks can last 2 to 5 days, leading to days off work and school. It can be debilitating, disfiguring and disabling.

Common triggers

Although exacerbations of hereditary angioedema can be unpredictable, there are well-established triggers that patients should avoid, if possible.

Some of the common triggers include physical trauma, infections, exercise, medications (eg, angiotensin-converting enzyme inhibitors, NSAIDs, oral contraceptives containing estrogen and penicillin), estrogen, stress and anxiety. Allergists/immunologists who have experience treating HAE discuss these triggers routinely.

Over the last few years, anxiety and stress have become more prominent triggers with the uncertainty of the pandemic and current economic pressures. When patients experience an increase in their anxiety or increased life-stressors, they will frequently have more HAE attacks and need rescue medication more frequently.

Thankfully, over the last decade there has been an uprising of effective medications to treat HAE — both for acute breakthrough attacks and prophylactic treatments to prevent exacerbations.

A ‘new’ trigger

However, there is problem.

We have a new, yet prominent trigger that is a specific subset of the increasing anxiety and stress mentioned above. I am naming it HAE exacerbations secondary to insurance barriers. Explanation of this demands further discussion.

Although there are known triggers and great medications available, the treatments are not inexpensive. Consequently, insurance will deny the patient access to the medications deemed necessary by the specialist who interviewed and examined the patient. Despite this, insurance makes the decisions on the therapeutics.

I feel, in this capacity, insurance is practicing medicine by making medical decisions on patients without a license to do so and with a conflict of interest, as paying for the medications impacts their profits.

Insurance has a financial interest to deny treatment. But they do not have liability for the consequences the patient may experience from the medical decision the insurance company makes.

Although there may be avenues for doctors to appeal the decision, they are cumbersome, time-consuming and often not possible as our offices have difficulty reaching anyone. Further, insurance companies continuously change their criteria. Medical doctors and staff are constantly faced with “moving goalposts” without warning.

Discussions and time are consumed by just trying to get patients access to necessary medication. Doctors and clinics must hire staff (significantly increasing their overhead costs because this is not reimbursable) just to fight insurance on behalf of patients to get them treatment. All the while, patients are left anxious with the uncertainty of whether they will get access to a medication that could change, and possibly save, their life.

The challenges and moving goalposts have created an all-time worst-case scenario, with overhead costs and stress to doctors causing us to reach a breaking point. We will continue to work to solve the insurance maze because that is what we do.

Patients, though, are left to wonder. The stress and frustration will often cause them to get angry with us — the doctors and our staff who are on their team. I had two staff members quit because of the stress and anger from patients despite our best efforts.

In these circumstances of worsening stress, anxiety and uncertainty, I am noticing patients having more health challenges. Specifically, my patients with HAE are experiencing exacerbations directly due to insurance challenges — which, ironically, leads to more drug utilization.

A call to action

Anxiety and stress are well-known HAE triggers. However, there is now also a specific subset of this category: HAE exacerbations secondary to insurance barriers.

I call for the HAE community of clinicians and patients to adopt this term for this emerging trigger. I ask it to be documented in clinic charts that are submitted to insurance companies, indicating that their decisions are a trigger. They, in fact, are worsening HAE in their own patients.

I call on the medical community and government officials alike to rein in the insurance companies and their overbearing influence on medical decisions between doctors and patients.

America is governed by the “golden rule” wherein, “He who has the gold makes the rule.” Insurance has the gold. But it is our government’s duty to be for the people, and for the patients.

If the goal is to decrease health care costs overall, why not start by looking at the largest profiters? It certainly is not the doctors or patients. It is the barriers between us.

For more information:

Douglas H. Jones, MD, FAAAAI, FACAAI, is cofounder of Global Food Therapy, Food Allergy Support Team and OITConnect, the director at Rocky Mountain Allergy at Tanner Clinic, and a Healio Allergy/Asthma Peer Perspective Board Member. He can be reached at rmaaimd@gmail.com or on Instagram @drdouglasjones.