Dear Mr Butler

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Last week, I was shattered to discover I'm ineligible for a life-changing medical breakthrough - subcutaneous immunoglobulin (SCIg) therapy.

I've been waiting for this breakthrough for 27 years.

At 30, I was diagnosed with a rare, progressive neurological disease, multifocal motor neuropathy. It marked the start of a journey through thousands of admissions across five hospitals to receive intravenous immunoglobulin (IVIg) to keep the disease at bay.

While I have accepted frequent hospitalisation as a necessity - every two or three weeks since diagnosis - I hate it. The way it interferes with my life, the lack of control around admission dates, the days lost to treatment and recovery, and the risk that accompanies each infusion. The lack of understanding and compassion for those of us who live with chronic disease. The hours I spend travelling to and from hospitals as a country patient. I understand it. But I hate it.

With subcutaneous treatment - now used around the world to treat my disease - I could administer the medication at home.

It would change my life beyond measure, allowing me to work, plan, and travel when I choose.

And it would remove the risk of catastrophic side effects associated with intravenous therapy.

Sadly, it isn't to be.

While research has found SCIg to be effective........

© Canberra Times