On November 11, Times of Malta reported Health Minister Jo Etienne Abela stating that the ministry of health is in “advanced” discussion with the president of Malta about taking over the responsibility of funding for cancer from the Malta Community Chest Fund (MCCF) sometime in 2025.

I have criticised the government and, especially, the previous health minister as well as the prime minister for abandoning cancer patients in assuring a clear pathway to funding for their treatment. Some will argue that the government has not really abdicated responsibility because, as reported by Times of Malta, the ministry of health handed out some €22 million during this year and is likely to give an additional €5 million to MCCF by its end.

Unfortunately, once access to such critical treatments is relegated to an ‘independent charity’ such as MCCF, the perception of discriminatory practices starts emerging. It gives the impression that the government wants to pick and choose. Consequently, it is positive that the current health minister is seeking to address the issue of cancer-funding.

I applaud Abela in seeking to reassume the government’s duty of cancer care by assuring funding for appropriate cancer treatment and, hopefully, in assuring funding for more costly novel therapies and personalised treatment such as Chimeric Antigen Therapy.

As a multiple myeloma survivor, I expect to witness the current minister address the issue of cancer and its funding in an equitable and professional manner. Yet, as a disenchanted multiple myeloma survivor who currently still receives about half of her life-extending funding for her treatment from the MCCF and the other half from the government, I will believe this when this happens.

I also  ask: What funding and organisational system will be established to ensure that access to cancer treatment is timely, transparent, ethical, representative of the various cancers, individualised and based on medical gold standards, open to public and professional scrutiny, one that is independent from the whims of politicians  and one in which patients have a right to appeal should their request for funding, which, on many occasions, is potentially life-saving or life-extending, is refused?

In the summer of 2020, I was forced to take a six-week break from the Daratumumab drug. This was because I did not receive a hard copy of an MCCF letter. Why did this happen? Eventually, I figured out that this was because one of my funding letters went to number 264 instead of 364.

I remain grateful to MCCF for their funding. I am likely to have expired otherwise. Nonetheless, MCCF was, and is, overstretched with its many responsibilities.

The government failed in its duty of care in ensuring me timely access to funding and in providing me with a clear path to allow me to understand: (1) how my application for funding was considered and (2) the process governing my right to appeal.

The right to life and, consequently, the right to timely, transparent and equitable access to cancer funding is our human right- Lara Said

So, what would I, as a cancer patient, expect enacted once the ministry of health takes over from MCCF?

Let me rewind to a presentation of mine that I submitted to the parliamentary committee for social affairs four years ago. At the time, I had lobbied for the inclusion of Daratumumab in the government formulary. I still do. If Daratumumab is not included in the government formulary, how is the government going to assure me continued funding for this drug?

Consequently, I would like to see that the government formulary is updated regularly and consistently and as framed by European medical regulation and by other medical and international gold standards.

In that same presentation of mine, I had also suggested that an independent body, perhaps broadly similar, to the National Institute for Care and Excellence (NICE) in the United Kingdom, should be eventually set up.

Why would I wish this? Based on my limited understanding, my interpretation is that the inclusion of such a medicine in the government formulary is still highly, if not completely, dependent on the prime minister, the finance minister and the health minister. From my experience of discussing this with the previous CGMO, the difficulty, in 2020/21, as to the lack of inclusion of Daratumumab in the government formulary was due to insufficient funds.

In my opinion, any CGMO should present the case for inclusion of any medicine based on significant factors such as survival rates, improvement to overall quality of life and cost-effectiveness. No CGMO, nor any other person, for that matter, should shoot down consideration for inclusion in the government formulary merely because of a perceived lack of funds.

Inclusion should be dependent on clear, transparent, gold-standard guidelines and protocols. Without an independent representative and an appropriately competent body of professionals to regulate important health matters such as the funding of treatment mismanagement, unethical and potentially corrupt use of precious public funds is likely to occur.

The right to life and, consequently, the right to timely, transparent and equitable access to cancer-funding is our human right as Maltese citizens and not a privilege.

Lara Said, PhD, is a multiple myeloma survivor.