While biologics have improved the lives of many people with autoimmune arthritis, accessing them can be as challenging as the conditions themselves.
The process of accessing advanced DMARDs is often long, exhausting and stressful for patients, which can exacerbate their joint pain and other arthritis symptoms.
We know you all do your best to make this process easier for your patients. We also know that you only have a few minutes to get through lots of issues when you see us and that you must follow the (understandably) strict PBS qualification processes to help us get access to advanced DMARDs.
Yet, people with these conditions continue to struggle with the challenges and emotions associated with accessing, starting or switching between these advanced treatments.
We thought this article might be a good way to help you keep the mental and emotional health of your patients in mind as you treat them.
To achieve this, we asked our CreakyJoints Australia Community Facebook group and others to share comments about their journeys with accessing advanced DMARDs. We have also added some suggestions on how you can continue to help meet our holistic needs during these times.
INITIAL ACCESS TO ADVANCED DMARDS
We regularly hear people not yet on any medications saying they are anxious about starting them due to possible side effects and being dependent on medications. Those for whom first-line treatments are not enough, cause severe side effects or don’t work at all face similar fears about progressing to biologics or JAK inhibitors. They also face many stressful months of trying various conventional treatments before they qualify for an advanced treatment. If they qualify, they can wait several months more to see if that treatment relieves their symptoms or not.
“I found the initial round of trying the first drugs very trying as they just weren’t working. I think I tried three medications over 18 very long months and I was desperate as I was feeling so unwell and in so much pain. My rheumatologist was very concerned but of course, could do nothing until I’d met all requirements with the other drugs. To say it was 18 months of hell would be an understatement. I thought nothing was going to work. The relief when that first biologic kicked in was nothing short of miraculous. — Lyn W
“I’m not on biologics at this stage, but my rheumatologist and I have started the application process. I was shocked by the amount of pre-testing required. I also found the number of different medication options overwhelming and their side effects frightening. The whole process is longer than I realised.” — Sharon C
UNDERSTANDING TREATMENT OPTIONS
Those who shared comments with us only had good things to say about the information and support they received from their rheumatologists about treatment options. We hope this is the case for everyone.
“My rheumatologist was very good at explaining the process to me and what is required and wants her patients to be able to access the best medication available for their condition. She gave me information on each of the medications which was helpful to be able to take away and read.” — Sharon C
“My rheumatologist was exceptionally helpful as I navigated the first lot of drugs. Every drug I took was carefully explained to me by my rheumatologist. I consider myself very lucky.” — Lyn W
CHALLENGES OF TRYING MULTIPLE BIOLOGICS
One of the hardest parts of being on biologics or JAK inhibitors is when they don’t work well enough to control our symptoms or when they don’t work at all. We then face going through the whole process again with a different advanced treatment knowing it could be months before we get adequate symptom relief.
To add to the stress, we know there are limits to how many advanced treatments we can fail before we lose PBS-subsidised access to them. The more treatments we try, the more anxious we get about what happens when we’ve tried all the treatments we can, especially people with rheumatoid arthritis who are only allowed to fail five such treatments in a lifetime.
“I am on these meds and have failed three. I have just found out I have Ankylosing Spondylitis and my RA meds work for it as well, so we need to be careful of ‘failing’ more. I am currently on a JAK inhibitor and have gone through all the other biologics and have no other options left for my RA but there are a few for the AS. We have just put that I have had an insufficient response to some which will allow us to try again if needed.” — Maz M
HOW YOU CAN HELP MAKE THE PROCESS EASIER FOR US
The Rheumatoid Arthritis Clinical Care Standard, released by the Australian Rheumatology Association in 2023, focuses on specific areas of care where improvements should lead to better health outcomes and an improved quality of life for people who live with this condition. We know many of you already incorporate these standards into your practice but we believe there are always ways to improve. We also believe these standards can be applied to all forms of autoimmune arthritis.
One of the Standards recommends that patients are empowered by their healthcare team to make use of the information, educational resources and support services available through consumer and professional organisations. Through signposting and encouraging engagement with such resources and services, healthcare professionals can empower and support people to effectively self-manage their condition. For example, the most common resource accessed on our website is our page on Government Support for People with Chronic Conditions.
The Standards also call for patients to have their pain experience assessed from a biological, psychological and social perspective, and have access to holistic pain management options. We would like to see pain management discussed more regularly with patients as their needs can often change.
Another Standard recommends that patients’ emotional and psychological wellbeing be assessed at least once per year, and supportive services offered when appropriate. These actions are especially important for patients who don’t meet the criteria for accessing advanced treatments, are waiting for access to them or waiting for them to work.
Finally, you can support us by advocating for systemic or policy changes needed to help us receive the best care possible.
We hope that by sharing our perspectives, we can help you better understand our needs and concerns. Above all, we thank you for all the support you readily give us.
Rosemary Ainley wrote this article on behalf of the CreakyJoints Australia team.
CreakyJoints Australia would like to thank Rheumatology Republic for this opportunity to share the patient voice within the Australian rheumatology community.
