Lupus survivor still advocating for better treatment options

May 10, 2023

Nine years ago, a then 21-year-old Lanesa Downs was diagnosed with lupus.

The autoimmune disease, in which the immune system attacks its own tissues, causes widespread inflammation and tissue damage in the affected organs. Four years after receiving her diagnosis, through relentless advocacy, Downs has influenced the Government to amend the list of covered illnesses under the National Health Fund (NHF) to include lupus.

Today is International Lupus Day, and looking back at the moment she heard the news about the policy shift on lupus, Downs told THE STAR, "I can still remember the moment when I saw the tweet."

"It felt surreal, like you know when you're pushing for some change or you're trying to get someone to acknowledge or get the Government to acknowledge an issue and when it's finally there, when they finally recognise and acknowledge and say 'Hey we're going to help you', it's like mixed emotions really."

"Like you're so happy that you're able to be heard 'cause most times you feel like you're not heard by the Government. Most times you feel like your complaints are just going to the void, so for them to actually recognise and research and try to help or try to start changing the process for us, I was extremely happy and I still am, even if there is more that can be done," she added.

Prior to the change in legislation, lupus patients had to pay upwards of a $100,000 for their daily-dose immunosuppressants. Without access to the medications, patients have flare-ups in their symptoms which include pain, fevers, hair loss and organ failure. The latter could ultimately lead to death. Downs said it was soon after being diagnosed that she realised the financial strain that living with this disease can cause.

"I passed the bar and I was working as an attorney and I couldn't afford my meds, and I knew others that didn't even get to finish school. So if I couldn't afford it and I'm supposed to be in some supposed prestigious field, then I couldn't imagine what others were going through," she explained.

Now as a NHF covered autoimmune disease, lupus patients can benefit from subsidies on certain medications, allowing them to access some at no cost while others are 80 per cent covered by the Government.

"Lupus is a bit tricky. So even though our immunosuppressants might be covered now under the NHF, there's still quite a few drugs that aren't covered at all because they're probably too expensive for even the Government to subsidise," said Downs. "And so some persons still have complaints that they can't afford everything or it doesn't make that much of a difference. And then I have others that say it makes a world of difference depending on the treatment plan for them. I will say, I think the Government took a step in the right direction of course, because some help is better than no help. So we're grateful but I think there's more that can be done."

She continued, "I think for International Lupus Day and moving forward, I think we should give patients and people on a whole, grace. Just try to be kind, try to understand what others are going through. Realise that this is an illness that we'll have for life, there is no cure and we have good days and bad days."

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