Providers urged to do more to help patients access care for hereditary angioedema

Key takeaways:

• Copay assistance and foundation support can help patients afford treatment.
• The end of the national COVID-19 emergency leaves reimbursement for telehealth in doubt.
• Rescue medication should be readily available.

It was with pleasure that we had the opportunity to review a manuscript written by our colleagues titled “Challenges in the management of hereditary angioedema in urban and rural settings: Results of a United States survey.”

We would like to congratulate Meadows et al on a well-written manuscript, which reported the troubling results of a survey that found significant obstacles for patients such as affordability and access to specialists as they sought care for their hereditary angioedema (HAE).

As noted by the authors, the response rate was in the single digits, which somewhat limits the interpretation of their findings. Nonetheless, there are many takeaways, as the authors noted. Some of our “take home messages” differ from the authors.

First, it is worth discussing concerns raised over costs. The authors noted that 76% of respondents found HAE care unaffordable. While the list price of these medications remains substantial, it is worth noting that health care providers can be a valuable resource in directing patients to programs to ameliorate this concern.

Several mechanisms are available to reduce out-of-pocket costs, including copay assistance programs provided by manufacturers and foundation support. While challenges particularly exist for patients on state and federal insurance, an educated staff can utilize Population Services International (PSI) and similar nonprofits to provide copay assistance.

Unfortunately, this year PSI and several other associations were underfunded, leading to patients receiving less assistance. The HAE Association has been working on a solution for this problem, and reimbursement specialists can reach out to the organization for specific information.

Obviously, this all can be challenging to navigate for an individual patient. But the high number of patients reporting financial stress related to these treatments serves to underscore that an understanding of these systems is increasingly vital for those providing care to this patient population.

Telehealth has no doubt been a blessing during the COVID-19 pandemic. The authors point out there are some major concerns at the present time and note that more restrictions are expected in the future. Further, with the end of the federal emergency declaration, at the time of this writing, the status of reimbursement for telehealth by both public and private insurers remains unclear.

However, the primary concern for our center has been the inability to provide telehealth visits for patients located out of state unless we have a license in the state that the patient resides in. As a “center of excellence for HAE,” we see many patients who travel from other states, which limits the benefits of having patients dependent on telehealth.

Should telehealth survive the end of the pandemic emergency, further advocacy efforts would be warranted to expand telehealth access and waive requirements for state licensing at least in some circumstances.

The authors suggest that home therapy and long-term prophylaxis (LTP) are important if people do not reside near a hospital as well. However, although this is a consideration for the use of LTP, by itself it is not sufficient reason.

Not all patients with the genetic and protein abnormality will have attacks, and many may have only a few attacks per year. Presently, the drug burden and cost would suggest this is not an optimal suggestion.

Instead, the emphasis should be on ready availability of rescue medication, with several doses on hand at home, and self-administration for all patients. LTP also should be prescribed based on shared decision making. It appears from the survey that only 67% of doctors considered the patient’s preference, which is contrary to the focus on shared decision making.

Finally, many barriers exist for individuals living in rural areas, especially those with rare diseases. As the authors suggest, for those in rural areas, cost of transportation, lack of education, distances to travel and income are often a concern. Most of these variables do also exist in varying degrees for those in urban centers.

It is our impression that the authors are spot on about the need for fair reimbursement of health care providers that provide care to Medicare and medical assistance patients. Unfortunately, the contrary is true. Rollbacks are already in the process in many states, and there are discussions on the national level of possible Medicare cuts.

It seems the most humanistic option currently is for our community to reach out to ensure those who have rare and orphan diseases receive optimal care from the closest allergist and immunologist to their home and have these allergists use centers of excellence for additional support for difficult and challenging cases.

References:

• Adler-Milstein J, et al. N Engl J Med. 2021;doi:10.1056/NEJMp2107879.
• Busse PJ, et al. J Allergy Clin Immunol Pract. 2021;doi:10.1016/j.jaip.2020.08.046.
• Craig T, et al. Ann Allergy Asthma Immunol. 2009;doi:10.1016/S1081-1206(10)60506-6.
• Maurer M, et al. Allergy. 2022;doi:10.1111/all.15214.
• Rosenbaum S, et al. N Engl J Med. 2023. 2023;doi:10.1056/NEJMp2301021.
• Sylvestre S, et al. J Allergy Clin Immunol Pract. 2021;doi:10.1016/j.jaip.2021.08.019.

For more information:

Timothy Craig, DO, can be reached at tcraig@pennstatehealth.psu.edu. Ethan Craig, MD, MHS, can be reached at ecraig@gmail.com.