From Health Policy Expert to Patient: Clinical Improvements and Patient Assistance in Eosinophilic Esophagitis

This is the third in a series of blog posts by PhRMA Foundation President Dr. Amy M. Miller on health policy from the perspective of a rare disease patient. If interested, read the first and second blogs.

Living with eosinophilic esophagitis (EoE) has been a challenging journey for me since my diagnosis in 2013. This rare chronic disease causes my esophagus to narrow, making swallowing difficult and painful. However, recent clinical advancements and the introduction of Dupixent as the first-ever on-label treatment have provided much-needed hope and relief to me and many other people.

In this blog post, I will share my experience with Dupixent and its patient assistance program, which has been instrumental in improving my EoE management and overall quality of life.

Life-Changing Improvements

Dupixent’s approval for EoE by the Food and Drug Administration (FDA) in 2022 marked a significant milestone in the management of this condition. As I shared in my previous blog, I had previously tried several drug combinations, but none were specifically developed for treating EoE. They were prescribed “off label” and didn’t work very well for me. I managed my condition with those medications and with annual dilations to stretch my esophagus.

Dupixent changed that. I have experienced remarkable clinical improvements. The medication effectively reduced the narrowing of my esophagus, putting an end to various distressing symptoms. Gone are the days of chest pain, pain while swallowing, food getting stuck in my throat, and regurgitation issues. Before taking Dupixent, I underwent multiple esophagus dilation procedures, but now, thanks to this innovative treatment, those procedures are no longer necessary. As a result, I experience less pain, have reduced time away from work and family, and overall, my medical costs have decreased.

The drug’s efficacy has had a profound impact on my life. I can now enjoy precious moments with my family during meals without the unsettling effects of swallowing difficulties. Pain-free swallowing has become a reality, and I can eat both ice cream and nuts again. Finally, I no longer fear going to restaurants worried that I may be exposed to an allergen. I cannot express enough gratitude for the improved health and well-being that Dupixent has brought into my life.

Patient Assistance Program

Accessing Dupixent initially proved to be a challenge. Fortuitously, I discovered the patient assistance program, Dupixent MyWay. The program consists of two components: product use and information assistance and financial aid.

I am fortunate to have an excellent medical plan with a reasonable copay for Dupixent, so I did not use the financial assistance part of this program. However, I recognize that the high cost of medication can be a significant barrier for many patients. Dupixent MyWay offers financial assistance in the form of co-pay support, making the medication more accessible to those in need.

I did take advantage of the product use and information assistance provided by the program, which has been an absolute lifeline for me in navigating the complexities of medication access and self-injection.

Help with Medication Management

When I first needed to fill the Dupixent prescription, my local pharmacy did not carry the medication. Feeling lost and unsure of what to do, I reached out to the Dupixent MyWay program, and they proved to be an invaluable resource. Not only did they facilitate the process of obtaining the prescription from my doctor and delivering it to a specialty pharmacy, but they also sent me a comprehensive quick-start kit. The kit included a sample injector, detailed instructions for self-injection, and even a sharps container for safe disposal of the used device.

What I found most valuable was the nurse support provided by the program. As someone who had never self-administered injections before, I was anxious about the process. The first few injections were painful, and I began to doubt if I could continue using the medication. However, the program arranged for a live video visit with a registered nurse, who patiently guided me through the injection process and explored different injection sites to find the least painful option. We discovered that injecting in the belly worked best for me, and this simple adjustment made a world of difference in my experience with Dupixent.

Beyond the invaluable nurse support, the program also offers peer support, connecting patients with others who are on Dupixent to share experiences and insights. It’s comforting to know that there are people who understand what I’m going through and can offer encouragement and advice. Moreover, the program provides a user-friendly app that helps me ensure correct timing for reordering my medication and offers essential reminders for administering injections. This app has become a reliable companion in my EoE management journey.

Dispelling Misconceptions

It’s unfortunate that patient assistance programs like Dupixent MyWay have faced misconceptions and negative perceptions. Some may believe that these programs push expensive medications onto patients, but in the case of rare diseases like EoE, where Dupixent is the only on-label treatment option, such arguments are unfounded.

Dupixent MyWay provides comprehensive patient support, from facilitating prescription processing to offering nurse-guided injections and ongoing assistance for self-injection, reordering, and even advice on traveling with the medication. The program truly puts patients’ needs at the forefront, making a meaningful impact on the lives of individuals living with EoE.

The clinical improvements brought about by Dupixent have revolutionized the management of eosinophilic esophagitis, providing patients with hope and relief. Additionally, the Dupixent MyWay program has been an incredible asset, guiding me through the complexities of medication access and offering crucial support and self-injection education.

It’s essential for patients, health care professionals, and policymakers to recognize the significance of patient assistance programs and the positive impact they have on rare disease patients’ lives. By embracing and supporting such programs, we can ensure better access to vital treatments and improve the overall well-being of patients.