Having primary biliary cholangitis (PBC) creates so much more stress than many people probably realize. Personally, I suffer with a lot of anxiety from day-to-day issues related to my disease. I stress about my symptoms, about not knowing day-to-day (or even hour-to-hour) how I will feel. I stress about my appointments, my blood work, my communication with my team of doctors, my family’s risk, my other autoimmune diseases, getting my medication, my future with PBC, a possible transplant and its complications, if my medication is in stock… and now I’m worried about my insurance coverage, something I need to stay alive.
Insurance coverage fears
In addition to PBC I also have a handful of other autoimmune diseases, some with overlapping symptoms, so I’m not always certain which autoimmune disease is causing fatigue or itching. I do know I suffer day in and day out, both physically and emotionally. I have been lucky enough to be eligible for Medicaid through my state due to my disabilities and inability to work. As a single mother with children still at home this has been lifesaving, and I’ve been very grateful.
However, things are changing — and unfortunately for people on the receiving end of these resources, it’s not looking to be in our favor.
I’ve read about cuts to referrals testing and medications ordered by doctors being downright refused. Not only are cuts being made, but many fear being kicked off the programs that are keeping us alive. Many of us can’t afford the proposed costs of private insurance offered through the Affordable Care Act (ACA) without subsidies. Between these cuts and the ones to Medicaid and Medicare programs, millions of Americans like me fear losing their coverage.
I’m in the process of applying for disability. Not for the check every month, but in the hope that it means I can carry some kind of health insurance benefits. As we all know, it’s crucial to have a good team of doctors and access to the care they recommend, from medications to lab work, fiber scans, ultrasounds, bone density scans and whatever else our individual needs require.
I know the first line treatment for PBC, ursodiol, is expensive. I’ve heard that there’s even been issues keeping it in stock at different locations. I’ve been fortunate enough not to have any delays in receiving my medication. I’m also lucky enough currently that it is the only medication I need for PBC. But I will require ursodiol for the rest of my life, so I need to ensure its availability and coverage.
More threats to care
Another big concern in the U.S. for people with chronic illness and autoimmune disease — and frankly any health conditions — is all the new tariffs that our current administration has been implementing on medications from other countries. Many medications in the U.S. come from India, China and other countries that are being hit hard with tariffs. I have read that the tariffs are proposed to increase 150% within the next 12 to 18 months, facing up to 250%. Assumably this will create shortages, which results in people not having their medication. This is very concerning.
I have no solution to these complex problems and situations that are out of our control. I’m trying to focus on my mental health and take one day at a time and not let it overwhelm me; however, I can’t pretend like these aren’t real threats to my survival, and to many others.
How are we supposed to live day-to-day without feeling extremely anxious and concerned? I feel we’re living in some pretty scary times, and I fear that a large proportion of us patients with PBC will be facing some serious complications and concerns regarding our health care.
I plan to speak to my doctors, and possibly my pharmacist, my caseworkers and my insurance. I would like to reach out to my local representatives and be a part of the solution by making my voice heard. I’m not sure what else to do. It’s frightening to feel like we don’t matter.
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