Social media is great for a lot of things — reconnecting with old friends, finding that next job, catching up on the news and perhaps even wasting a little (a lot of!) time. But when Anna Legassie logged on back in May, she wasn’t doing any of those things. She was just trying to get her medicine.
From Excitement to Disappointment
Anna, now 31 years old, was diagnosed with systemic juvenile rheumatoid arthritis (JRA) when she was 11 years old. She has endured six hip surgeries, multiple hospital stays and a constantly changing cocktail of medications to keep her arthritis at bay. After a particularly difficult spring suffering through the side effects of methotrexate, she and her doctor decided to decided to try Orencia (abatacept), a biologic drug that she would would receive by infusion every four weeks. Anna had tried most of the other biologic drugs on the market. None of them had been a fit for her.
“Back on May 21, I left my rheumatologist’s office on cloud nine,” says Anna. “I was feeling pretty excited to start Orencia as soon as possible.”
几天后，当安娜接到她医生助理的电话时，兴奋变成了失望。安娜的保险公司拒绝了她对奥伦西亚的申请，因为他们要求进行逐步治疗，这是一种利益管理工具，要求患者在批准处方药物之前，在130天的时间内尝试其他类似的药物，然后失败。他们为安娜提供了两种治疗方案——都是注射，这在过去曾给安娜造成过严重的注射部位反应。更糟糕的是，安娜之前已经有一种药物失效了——只是没有在规定的130天时限内失效。
“I was completely and utterly defeated,” says Anna.
Anna spent the next hour on the phone trying to launch the appeal process with a representative with her insurance company, but she hung up feeling even more frustrated.
“I couldn’t even get a definitive timeline on the appeals process,” says Anna. “It seemed like it was going to take weeks and weeks. Mentally and emotionally, that was not time I had.”
Social Media as Advocacy Tool
After taking a deep breath, Anna logged into Facebook and bared her soul to her family and friends in a long post. She talked both about her arthritis and also the time, energy and resources it often takes just to get the proper care. Sharing so openly on social media wasn’t typically Anna’s style, but because of her role as an advocate and ambassador for the Arthritis Foundation, she felt called to tell her story.
“What followed was a huge outpouring of support, but also of encouragement to tell my story to the people who needed to hear it most — my insurance company,” says Anna.
Anna had attended a social media how-to class at the Arthritis Foundation’sAdvocacy Summit她知道，社交媒体可以成为一个强大的、非常公开的宣传工具。倡导峰会结束后，安娜立即开通了一个Twitter账户，与她在峰会上遇到的每个人以及其他患有关节炎的年轻人联系起来。这意味着她有一大群会支持她的追随者。她开始进行战略思考，并开始起草推特和Facebook帖子，打算用这些内容联系她的保险公司。事实证明，她甚至不需要使用所有这些东西。
“I only sent five tweets in total, plus two Facebook posts,” says Anna. “Just those few posts started to generate a conversation among my followers as we tweeted our experiences to one another. Person after person retweeted my tweets, as well as parts of our emotionally charged conversations. By 10:00 a.m. on May 28, my insurance company responded.”
The insurance company reached out to Anna through direct message on Twitter asking how they could reach her. When she responded with her phone number, she also included a link to herpersonal storyon her blog,Six Hips and Counting.
“I wanted to give them the opportunity to get to know me as a person,” says Anna. “Personal stories are very powerful, and it was important to me for them to know the person that they were hurting with their protocol.”
Just three hours later, Anna’s insurance company let her know that they would overturn their original decision and that she would be able to proceed with Orencia. Anna spent the next few weeks going back to the doctor to get the prescription resubmitted and calling the insurance company multiple times to get it processed, approved and shipped to the pharmacy.
“Even after approval, it still took a long time from the time I got word from the insurance company to the time I actually got my first infusion,” says Anna. “But for me, knowing that I am moving forward and making progress is enough to put me in a better place emotionally and to be able to roll with whatever might come my way.”
It’s Not Just Personal
安娜期待着一周后的第二次输液，她希望自己的故事也能让其他人受益。
“Something like this is bigger than me and whether or not I get my Orencia,” says Anna. “It raises awareness so that people outside the chronic illness community know that these policies exist. It shows people that the Arthritis Foundation and other organizations are working to change these policies. Most importantly, I hope that other patients will learn from my experience and empower themselves to advocate on their own behalf in the future.”
Way to go Anna! I applaud your tenacity in standing up for yourself, your rights, your health, and in bringing awareness to an all to common and unnecessary obstacle that prevents many patients from receiving appropriate doctor recommended therapies in a timely and expedient manner. As a practicing pediatrician that is living with rheumatoid arthritis and osteoarthritis, I understand both the doctor and patient side of medicine, and the frustration that can be caused by insurance companies attempting to dictate care/treatment for everyone overall, rather than examining individual patient needs. There is no “one-size fits all” in medicine, and especially with rheumatologic disease! Thank you for standing up for yourself, and in the process, for us ALL! Arthritis sucks, but it also makes us tougher, stronger, and more determined to fight for what is right and fair! May your fiery, courageous, strong personality continue to serve you well as an advocate for your own healthcare and inspire others to do the same!
I too am battling to begin Orencia infusion. I have RA and fibromyalgia l,osteoarthritis plus throw in diabetes. I have used other biologics and they no longer work for me. Methotrexate was a nightmare. I just began Medicare this year so another roadblock to get past. We have been working on it for 3 months. I am hoping soon. Thank you for taking the battle on.
Thank you for sharing your story. I have a daughter with JIA and worry about what it will be like for her as an adult. You have inspired me to keep fighting.
你去女孩!你是一个真正的关节炎战士。谢谢你给我灵感让我继续踢关节炎的屁股。