Insurance delays, denials negatively impact patients with hereditary angioedema

Key takeaways:

• Patients who did not have access to medications reported up to four or more attacks per month.
• Ninety percent of patients who did not have access to medications reported increased anxiety.

SAN ANTONIO — Insurance delays and denials for hereditary angioedema medication have a negative impact on physical and mental health, according to data presented at the American Academy of Allergy, Asthma & Immunology Annual Meeting.

“Although modern therapies have dramatically improved quality of life, insurance delays and denials for medications have become a lot more common,” Nonie S. Arora, MD, MBA, resident physician, department of internal medicine, University of Michigan, said during her presentation.

The researchers surveyed 20 patients aged 18 years and older with type I or II hereditary angioedema (HAE) who have had insurance issues pertaining to their HAE medications within the previous 2 years. Also, 19 of these patients participated in a virtual follow-up focus group.

Nonie S. Arora

“The survey and the focus group addressed the impact of insurance challenges on the use of health care services, work and school attendance, impact on family life, and anxiety,” Arora said.

Using descriptive statistics, the researchers analyzed the survey results. Also, three independent reviewers used a thematic saturation approach to code each focus group transcript.

Quantitative results

Patients who did not have access to HAE medications reported that they had more frequent HAE attacks. For example, patients who had access to medication were more likely to have fewer than one attack per month, whereas the only patients who had four or more attacks per month were those who did not have access to medication.

The survey also implicated step therapy, where an older and less expensive medication needs to fail before a modern and more expensive medication is approved, in a higher number of attacks. Patients additionally reported that they were frustrated when they were not able to access previous effective medication.

Also, 16 (80%) of the patients regained access to their medications and had a mean Angioedema Control Test (AECT) score of 11.7 (standard deviation [SD], 3.2). The four patients who did not regain access had a mean AECT score of 7 (SD, 3.6), indicating poor control of angioedema symptoms (P = .02).

More than half of the respondents missed work or school due to increases in attacks when they did not have access to medication as well, with a mean of 4 missed days. Also, 85% of patients called their allergist or primary care provider when they did not have access to medication.

Further, urgent care visits increased by 1.3 days per month (95% CI, 1.2-1.4) and ED visits increased by 3 days per month (95% CI, 2.8-3.2) for patients who lacked access, with significant associated costs.

Anxiety increased for 90% of patients when they could not access their medications, with delayed notification of insurance formulary changes exacerbating this anxiety. The financial impacts of missed work or school on the families of these patients worsened mental health as well.

Qualitative results

Five themes pertaining to the impact that these delays and denials had on patients emerged from the analysis:

1. “negative emotions and heightened anxiety;
2. missed work and school and negative financial impacts;
3. significant impact on family life and friends;
4. avoidance of a broad spectrum of activities that may trigger angioedema symptoms; and
5. more frequent HAE attacks leading to ED visits and hospitalizations.”

“Patients really commented that the fear and anxiety of losing access to their medications and going back to not having access was very difficult,” Arora said.

Swells kept one patient from being able to work at their physical, hands-on job, resulting in a loss of income. Due to triggering easily and often, another patient likened being without medication to living “in a bubble.”

Similarly, five themes pertaining to what patients had to endure to regain access to HAE medications also emerged:

1. insurance company requirements to try alternative medications that often do not work, or step therapy;
2. needing prior authorization frequently, as well as repeated lab work;
3. exorbitant amount of time communicating with insurance companies, pharmacies and doctor’s offices;
4. minimal notice when changes occurred with insurance; and
5. varied support sources, such as family, drug company programs, physician offices and the Hereditary Angioedema Association.

“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 3 months?” one patient said.

Another patient likened the 40 hours a week spent on the phone to get approval as “a full-time job.”

Recommendations

“The insurance delays and denials for HAE medications had significant impacts on patients’ physical health, mental health, workforce productivity and family life,” Arora said. “The negative impact of delays and denials points to a need for change in insurance company policies and practices.”

The researchers urged insurance companies to define clinical criteria for drug approval, make these criteria transparent, and provide them in an easily accessible format to prevent delays in care.

Also, the researchers called on insurance companies to streamline the process for obtaining insurance authorization and improve clarity for patients and their care teams.

“It’s particularly important that patients and doctors receive sufficient advance notice of formulary changes to allow time for an appeal or a therapy change,” Arora said.