US health insurance problems affect well-being of HAE patients: Survey | US insurance coverage delays, denials ’cause huge disruptions’ for HAE patients

Posted in :


Insurance issues significantly affected the physical, psychological, and financial health of people with hereditary angioedema (HAE) in the US, according to a recent patient survey.

Patients reported that health insurance delays and coverage denials led to more frequent HAE attacks, urgent care visits, missed work or school, and greater anxiety.

“Barriers to care due to insurance delays are well documented, but data is lacking for HAE patients,” Nonie S. Arora, MD, of the University of Michigan and the study’s corresponding author, said in a press release. “We set out to examine not only the impact those denials and delays had on physical health, but also mental well-being and familial hardships.”

Findings from the survey, which were presented at the 2023 American Academy of Allergy, Asthma, and Immunology (AAAAI) Annual Meeting, held Feb. 24-27 in San Antonio, Texas, have now been published in The Journal of Allergy and Clinical Immunology: In Practice.

The study is titled “Consequences of Insurance Coverage Delays and Denials for Patients With Hereditary Angioedema.”

Recommended Reading

A woman taking medication given her by a doctor in his office.

Recent therapies for swelling attacks have greatly improved patient health

HAE patients experience sudden, unprovoked swelling attacks that can be life-threatening in some cases. In recent years, the development of preventive and on-demand therapies for these swelling attacks has greatly improved patient health.

Still, incidents of insurance companies delaying or denying coverage for HAE treatments are becoming increasingly common, according to researchers.

Such practices can include the requirement of prior authorizations, which means that patients must obtain certain approvals before they can access a therapy or medical service, or the use of step therapy, a process in which less costly medications must be tried first before an insurance company will agree to cover more costly treatments.

When faced with these barriers, access to needed treatments may be delayed or denied, affecting not only a person’s physical health, but also their mental health.

To learn more about the impact of insurance barriers on the health of HAE patients, researchers at the University of Michigan collaborated with the HAE Association to conduct an online survey of 20 patients in the US who recently reported insurance delays or denials that limited their access to HAE medications.

All but one participant then joined one of four follow-up focus groups designed to learn more about their experiences.

I was on the phone probably 40 hours a week for several months. I mean, it was a full-time job keeping up with this to get [insurance coverage] approval.

Most patients surveyed had health insurance

Surveyed patients were a mean age of 43.4 years, and the majority (70%) were female. Most patients (80%) had private or employer-based insurance.

Ultimately, 70% of survey respondents reported they were experiencing more angioedema attacks when they lacked access to their HAE medications due to insurance delays or denials.

This was linked to more visits to urgent care or the emergency room, which was reported by 25% of patients. More than half also said they missed school or work days, and most (90%) reported experiencing greater levels of anxiety amid their insurance delays.

Ultimately, 80% of those surveyed reported regaining access to their HAE medications at some point. The 20% who did not regain access had worse control of their HAE symptoms than those who did.

Findings from the focus groups further highlight the negative impacts of insurance barriers on patients’ physical health, as well as on their social/family, and work/school life.

“Several themes emerged when we looked at data from the focus groups,” Arora said. “Patients described having to ‘live in a bubble’ and avoid usual activities when they lacked access to their HAE medications.”

“Some participants reported difficulty participating in routine tasks, like cooking or cleaning,” Arora said.

Recommended Reading

banner image for Danita LaShelle Jones' column,

Insurance requirements add to patient frustration

The focus group analysis also noted a number of specific requirements or practices by insurance companies that were specifically linked to these negative outcomes, including step therapy, prior authorization requirements, and requests for additional lab work.

“It’s frustrating because it’s a genetic disorder. My genes have not changed from the day I was born. So why am I doing this every three months?” one of the surveyed patients said about the need for frequent prior authorization and repeated lab work.

Short notices of insurance changes and excessive time spent communicating with insurance companies and providers were also noted, which in turn added to the frustration and anxiety patients were experiencing.

“I was on the phone probably 40 hours a week for several months. I mean, it was a full-time job keeping up with this to get approval,” said one of the respondents.

Altogether, “this shows that insurance delays and denials cause huge disruptions in our patient’s lives,” Arora said.

In February, the AAAAI released a position statement about the impacts of prior authorization requirements, positing that the practice diverts resources away from patient care, delaying treatment access and preventing continuity of care for HAE patients and others with allergic or immune diseases.

“Improvements in the insurance authorization process for medications would have significant benefits for patient health and well-being,” the team wrote.