As we approach the start of summer, I've been reflecting on the many ways patients, families, advocates, and partners continue to strengthen our community through collaborative connections and engagement.

In this issue, we’re highlighting stories from our Virtual Advocacy for Access Week, whose personal experiences remind us why patient voices must remain at the center of healthcare policy discussions. We also have an opportunity to share your perspective on step therapy, and several exciting updates across our organization, including the expansion of our A.C.C.E.S.S.® Legal Aid program support for the communities we serve.

Progress is made through partnership, advocacy, and the willingness to share lived experiences. We remain committed to advancing access to care and creating meaningful opportunities for individuals and families to be heard.

Last month's "Virtual Advocacy for Access Week" brought together patient advocates, policy experts, and partners for important conversations centered on healthcare access, affordability, and coverage. Throughout the event, advocates shared personal experiences that highlighted the real-life impact of policy decisions and the ongoing challenges many individuals and families face when trying to access the care they need.

We’re honored to share reflections from advocates David, Narah, and Lynsey, whose stories helped bring these conversations to life. Together, their voices reinforce why advocacy matters and why ensuring patients are heard remains at the center of meaningful healthcare change.

To learn more about Accessia Health’s key advocacy priorities and discover ways to get involved, we encourage you to visit our Policy & Advocacy webpage. You can also stay informed on the latest healthcare policy developments and updates from Capitol Hill by signing up for our quarterly Policy & Advocacy newsletter.

May 16th marked Hereditary Angioedema (HAE) Awareness Day, dedicated to raising awareness of a rare genetic condition that can cause recurring and potentially life-threatening swelling episodes throughout the body. For individuals living with HAE, managing the condition often means navigating ongoing treatments, specialist care, emergency preparedness, and the financial burden that can come with it.

At Accessia Health, we understand that the cost of care should never stand in the way of treatment or peace of mind. Through our open HAE Patient Program, eligible individuals may receive financial assistance for healthcare expenses related to their diagnosis, helping reduce the burden of managing care and supporting access to the treatments and services they rely on most.

We are especially grateful to patients like Cheryl, LaTonya, and Debbie for sharing their stories and allowing us to highlight their experiences. Your voices help bring awareness to the realities of HAE while reminding others that they are not alone.

Explore more HAE resources for you or a loved one:

▶ Hereditary Angioedema Association

▶ HAE International

▶ Discover HAE

▶ HAEVN

We want to hear about your experience and better understand how medication requirements may have affected your health, treatment journey, or quality of life. Your feedback can help support Accessia Health's advocacy efforts aimed at ensuring healthcare providers have the flexibility to override step therapy requirements when they may be harmful, burdensome, or medically inappropriate for patients.

We’re pleased to share that our A.C.C.E.S.S.® Legal Aid program has expanded to support individuals living with Alpha-1 Antitrypsin Deficiency, Chronic Inflammatory Demyelinating Polyneuropathy, Hemophilia and other related Bleeding Disorders, Pompe and LOPD – Late Onset Pompe Disease, Primary Immune Deficiency, Pulmonary Fibrosis, and Pulmonary Hypertension.

Through A.C.C.E.S.S., eligible individuals can receive free legal assistance with Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) applications and appeals.

To help make applying for assistance even easier, we’ve also released a new video, "How To Fill Out A Patient Assistance Application", which walks applicants through the process step-by-step and provides helpful guidance for completing an application. Take a moment to watch below!

*Program space is limited and is offered on a first-come, first-served basis. Programs will only remain open as long as funding is available.

If a program is full, you can still apply to add your name to the program waitlist. Once you are on the waitlist, you will be notified if assistance becomes available.



To apply:

1. Click the button below.
2. Select 'open' under 'step two'.
3. Select the appropriate program and begin the application process.

Accessia Health, a national charitable patient assistance organization, is dedicated to eliminating healthcare barriers for people with rare or chronic health conditions. Comprehensive services include personalized case management, financial assistance, education, and legal aid support. Our flexible funding model goes beyond copays, allowing individuals to pay for other essential medical expenses including insurance premiums, screening and diagnostics, therapy services, travel costs and more. Accessia Health works to ensure that every individual has access to the care they need to lead a healthier life. 

Accessia Health exists because of generous donations from our community.

Consider making a gift to provide health and hope to patients nationwide.