I recently celebrated my 55th birthday. “Five extra years,” I told a colleague of mine, “this October will mark the fifth year of my multiple myeloma diagnosis.”
Multiple myeloma is an incurable but generally highly treatable blood cancer. Initially, the diagnosis devastated me but my spirits were lifted when, after a few relapses, the myeloma in my body was decreased sufficiently to the point that I qualified for a stem cell transplant.
From October 2019 until March 2020, doctors in the UK tried to mobilise a sufficient number of my own stem cells for me to be able undergo this life-extending treatment. Unfortunately, it soon became apparent that this would not be possible. I returned to Malta thinking that I did not have much more time.
Following my inability to undergo a stem cell transplant, I was told that a type of triple combination therapy was the best treatment option for me. Now, three years into my Pomalidomide, Dexamethosone and Daratumumab treatment regimen, life is good but not without its struggles.
Some of these ‘extra’ days are not so good as others. I get especially anxious when I have to reapply, roughly every three months, to the Malta Community Chest Fund for funding for Daratumumab. This treatment is not considered as conventional and, consequently, is not included in the formulary for free medicinals. Should MCCF, for some reason or another, stop my funding for Dara, my chances of relapsing are high.
My experience of procuring access to cancer treatment leads me now to believe that the current government does not care. The minister of health is more focused in advertising his COVID-19, WHO and other achievements than seeing that funding for cancer is properly and transparently attended to.
The prime minister seems to pleasure in power. The power to drag his feet in caring for the more vulnerable members of society.
My experience of procuring access to cancer treatment leads me now to believe that the current government does not care- Lara Said
Forget those with cancer, the prime minister finds it very difficult to understand that when buildings fall on Maltese citizens the reasons for this need to be properly investigated at once.
As long as life-extending and life-improving EU approved medication is not listed in the government formulary then I am living at the mercy of MCCF and, sometimes, at the mercy of the government.
The latter seems to happen when MCCF runs out of money and the government deems it fit to allocate much needed life-saving funds.
As long as the inclusion of medicinals in the government formulary is not conducted in an ongoing, systematic and interdisciplinary manner, independent of the whims and fancies of whoever is minister for health, then, my rights to access such medication and to have the right to more transparent routes of appeal when such access is denied are being ignored, denied and trampled upon.
As long as MCCF keeps ‘wasting’ its funds on medication that should be included in the formulary, then, I am being taxed twice over. Worse still, MCCF is likely not to fund individuals who require potentially costlier clinical trial and/or experimental medication which is not yet EU approved. For a few, this might prove the only option for the chance of extended survival.
Funding for novel therapies and orphan drugs on behalf of the State, in my opinion, is on a decreasing trajectory when considered in real terms. The government is intent on depleting the hard-earned resources of MCCF by not accepting responsibility for the funding of medicinals that are EU approved and increasingly considered as mainstream cancer treatment in a majority of EU countries.
Lara SaidI consider this lack of accountability to be a shameful and cowardly act.
Dear reader, what do you think?
Lara Said Ph.D, is a multiple myeloma survivor. She is also an academic and teacher educator.