Read about what step therapy put a young arthritis patient through.
My name is Sophie Sherman, and I am a rising high school senior from Brookline, Massachusetts. When I was 11, my parents started to notice that I wasn’t acting like myself. Instead of spending time with my friends after school, I would take four-hour-long naps on the living room sofa. Instead of asking for seconds on pasta night, I would barely touch my plate. It seemed like everything I did, be it physical or mental, consumed every ounce of my energy.
我的崩溃发生在2012年夏天我们全家度假的时候。我醒来后发现我的背部疼痛难忍;我动弹不得，无法从床上起来。我不知道自己发生了什么，虽然我很害怕，但最令人担忧的时刻发生在几个月后，我的新风湿病医生诊断我患有银屑病关节炎。困惑是最难的部分。当时我只有11岁，根本不知道这种疾病意味着什么。Despite countless explanations from countless professionals, the only information that truly stuck was the fact that I was going to have to get weekly treatment in the form of a daunting needle.
In the beginning, I had to try oral medications, which only made me sicker. When I started on a biologic, it was like a miracle. I had spent months feeling sluggish, in pain and immobile. The very day after my first biologic injection, I sprinted entire laps around Singing Beach. In just 24 hours, I had gone from a girl who could barely function to one who could keep up with her little brothers as we played together in the ocean’s waves. In that moment, I didn’t care about a weekly needle; it was simply an unlucky price I had to pay to regain mobility, energy and happiness.
我以为现在会是这样。我还在上高中，以为关节疼痛和精神疲惫的日子已经一去不复返了。然而，在服用了“神奇药物”两年后，我开始对注射产生了免疫力。我的医生告诉我，我需要换一种能更好地控制关节炎的药物;然而，这个“简单”的开关却让我失去了一部分生活。我的新药需要得到保险公司的批准，就在我等待的时候，我的关节炎没有得到检查。我开始服用一种对我不起作用的新药。因为循序渐进的治疗，我不得不等了三个月才可以增加剂量，又等了三个月才被认为是“失败”的药物。在这个过程中，我很痛苦，也很疲惫。
我开始注意到自己很难跟上队里的其他女生，上课也很难集中注意力。有时候，我连扣外套纽扣和在笔记本电脑上打字都有困难。关节炎引起的“脑雾”和关节疼痛再次出现。我的成绩开始下滑，因为长期的疲劳使我不能在课堂上表现得最好。更重要的是，这种疲劳使我很难维持我的人际关系，我发现自己不由自主地疏远我的朋友，以保存精力。最后，我不得不退出我已经工作了两年的摄制组。划船、举船，甚至完成全队的跑步，都让我的关节炎发作，关节疼痛得厉害。
Each time I started a new medication, it stopped being effective in a matter of weeks. I had no option but to repeat the arduous process of switching to another biologic. It was step therapy protocol to test me on different injections, but in the meantime, I was truly miserable. My high school years were supposed to be some of the best years of my life. But because of step therapy, I can’t help but feel as though they slipped through the cracks.
I am now 17 and fast approaching my senior year of high school. Since my diagnosis, I have been on five different biologics. To me, every one of the long transitions between medications meant facing more physical pain and mental exhaustion. Though I have been steady on my current medicine for a few months, I am afraid that it, too, will become ineffective, and I will once again have to endure step therapy protocols. I want to make the most of the last moments I have at home and with my classmates, making my final year one for the books. Step therapy could get in the way of my goal. It is imperative that these protocols be reformed to improve quality of life for thousands of patients like me.
Together, we can help put patient protections in place and make access to care easier for all.The Safe Step Act is federal legislation that would put much-needed guardrails into place, which would make getting on the right medication easier for patients like me.
You can help! Send a message to your legislator today, asking them to support this important legislation.