The Patient Experience with AASLD
Soon after my diagnosis with hepatitis C, I was looking online for information. One of the websites I visited was the American Association for the Study of Liver Disease, or AASLD. The same month that I had my guided needle liver biopsy, they were having a meeting in Boston. It was somehow comforting to know that medical experts from around the world were studying hepatitis C and how it affected the liver. Who would have thought that I would eventually be asked to share the patient experience with AASLD.
What is AASLD?
The organization was form in 1950 by a small group of doctors who specialized in liver disease. Their mission was to better understand science and medical practices to promote liver health and bring high quality patient care.
Who joins the AASLD?
With a combined membership of over 5,000 members, they have many different backgrounds. Some are nurses, researchers, and scientists. Others are liver specialists called hepatologists. They work together to understand how to help hepatitis C patients get the care they need before, during, and after treatment. I first learned about them from my doctor when he told me about the treatments for hep C. He read articles written about the studies for treatments.
What does the AASLD do?
The AASLD help collect data about patient experience for those of us who have Hepatitis or other liver diseases. They study the numbers to understand how patients respond to treatment. When I was treating for hep C, my doctor often spoke about the best time to start treatment based on the AASLD guidelines. It helped me feel safer knowing that thousands of doctors were all communicating. They collected information, and then shared it with each other to help us, the patient.
The patient experience
After my diagnosis with hep C, I was scared. My liver was very sick because of having hepatitis C for many years. My mind was stressed out, and I needed some answers. I love to read, and studied a lot of the articles on the AASLD website. Sometimes it was hard to understand, so I would write emails to the doctors. Some of them wrote me back and encouraged me during my treatment. We became internet friends.
It made me feel really comforted to know that men and women who spent their entire lives studying liver disease cared about helping someone like me. I was just a woman who was super sick and scared of hepatitis C. Knowing that someone with the AASLD wanted to know how ALL patients felt during their experience with hep C felt good.
The patient voice
The AASLD taught me that patients do have a story to tell about hepatitis, and that medical providers want to hear from the patient. Of course, doctors have a busy schedule, but most of them truly care about the patient experience.
Last year, I was invited to help by researching and writing documents about COVID-19. I’ve been given other opportunities also. I listen and learn a lot in the AASLD meetings. You know me, I’m always happy to talk about how the patient feels, and help medical providers understand the patient experience with the AASLD. I always think of our common problem with hep C and how we are overcoming our struggles with liver disease.
What patient advocacy are you involved with?
Do you experience long-term side effects from hep C treatment?