On October 25, Lydia Abela described Budget 2021 in all its glory in her successful bid to sing praise to the current government.
Myself a mere mortal, agreed with her on all counts but one: I still get no government funding as part of the local national healthcare service for a critical oncology drug called Daratumumab.
And it is very important for me let it be known that I am not alone in this struggle of mine.
In my comment to her unavoidably biased opinion piece, I politely urged her to influence her husband, as prime minster of the Maltese islands, to influence Chris Fearne and Edward Scicluna to grant me a chance to live longer by seeing that critical oncology/haematology drugs are included in the government register of free medicinals.
Ironically, Budget 2021 promises investment in palliative care. This, at least, ensures that I will die well.
I now share my story with you. I leave it up to you, the reader, to decide whether these are the justifiable feelings of another unavoidably biased human being who is just trying to survive longer.
I have multiple myeloma, which is a disorder of the blood. This is incurable but manageable when receiving the appropriate treatment.
My current fourth line of treatment involves Pomalidomide, Dexamethasone and Daratumumab. The first two drugs are supplied by the government as part of the healthcare system. Daratumumab is not. Across the EU, Daratumumab and other such critical drugs are paid for by the government first, not by charities.
I am particularly upset that I am expected and required to depend on the charity of the Community Chest Fund when I require Daratumumab to be able to hope for a chance for improved survival, with no government provision for the funding of this drug.
Why does the government, which has repeatedly promised excellent cancer treatment as part of the National Cancer Plan 2017-2021 and even in Budget 2021, not include critical oncology/haematology drugs as part of the government register?
Does the government expect me to turn all dramatic and beg for a chance to live longer?- Lara Said
Do I and others in a similar predicament constitute the forgotten? Do we not have a right for increased consistency and stability of care as others? Is the government in the process of doing so and forgot to include this as part of Budget 2021? The cynic in me asks: might this be a way to deregulate this critical sector?
I have sent out letters to everyone who is someone in the House of Representatives.
I have made emotional written pleas such as this, including and, especially, to the prime minister, the minister of health and the minister for finance. I have been politely acknowledged and I have been politely ignored; twice over in some cases. A few have shown me that they care by simply picking up a telephone to speak to me about this matter. It was great to talk.
Now, two questions to you, dear readers, including Lydia Abela: am I unreasonable in expecting a similar standard of cancer care and treatment as in the EU? Am I overly demanding in wanting a fair and transparent system for everyone,that covers other drugs and not just Daratumumab?
Or does the government expect me to turn all dramatic and beg for a chance to live longer, over and above the opportunity to die sooner but well? Does it expect others in my similar situation to do the same too? Or does it just sweep everything under the carpet as we Maltese so seem to enjoy doing?
Lara Said is a multiple myeloma survivor.