A woman with an incurable form of blood cancer is hoping that in the new year she will not need to continue begging the government to fund treatment that she says is keeping her alive.
Lara Said, 52, has multiple myeloma, a cancer that forms in plasma cells. Her treatment consists of a combination of three medications, two of which are on the formulary list.
However, the third medication – Daratumumab – is not, and she has to rely on funding from the Malta Community Chest Fund foundation.
The academic and mother-of-two told Times of Malta that the funding, which she is grateful for, is currently granted monthly and does not always cover the total costs.
The difference in costs usually runs into hundreds of euros every week.
In her most recent plea to the authorities, she told the prime minister that her odds of relapsing have increased due to a “highly inefficient system” that grants “critical life-extending primary cancer care”.
“My request is that the government, through the ministry of health, includes Daratumumab as part of the government formulary list for free medicinals,” she told Robert Abela in a passionate email.
“I have nothing to lose except my life. I am a teacher at heart, and I do have the courage and fortitude to try to live for as long as possible even in the face of an unfair political system that is widening all forms of divides between the haves and the have nots.”
She insisted that a few days can make a big difference for her survival.
“I understand that it is perhaps only critical for me and perhaps a few others. It does not really make a difference to you or the minister for health especially,” she said.
“My life is not apparently as valuable, but I am now seeing myeloma friends as also more likely to die because of this unfair and life-threateningly slow system, and this is not right.”
Said told Times of Malta that at one point, her treatment was delayed by seven weeks because of a bureaucratic error, an incident which pushed her to write to the health minister in September.
In a letter addressed to Chris Fearne, she admits that Daratumumab is an expensive drug but one that is cost-effective in controlling progression of myeloma for patients who are ineligible for a stem cell transplant, like herself.
The cost of the drug runs into thousands of euro a month.
She added that the treatment is funded by other European governments as part of their national healthcare system. It has, for example, been approved, for limited use, by NHS patients in England and Wales in 2018.
“Successive governments have been too willing to pass on the responsibility of oncology treatment to a charity, albeit one led by President of Malta,” she had told Fearne in September.
“Choosing who gets access to potentially life-saving and/or life-extending treatment should not be the main role of charities.
“This places the charity, its executives and its board members, in a position of ethical, if not legal, difficulty, at the very least,” she added in her letter to the health minister.
A health ministry spokeswoman said the number of oncology drugs added to the government formulary have been increasing since 2017.
“Around 12 oncology drugs have been so far added, benefitting around 700 patients. So far, around €18.5 million have been spent,” she said yesterday.
Other drugs, she said, would be added to the “ongoing project” but did not specify if Daratumumab will be included.