A cancer patient prescribed a drug that costs €13,000 per month has spoken about the need for the government to include such life-saving medication in the list of free medicines.

The 62-year-old primary school teacher has to stop working on doctors’ advice because small children could transmit infections to her weak immune system.

But Carmen (not her real name) says she is “fortunate” because the medicine is covered by her husband’s health insurance, at least for the time being.

“But not everyone is as lucky,” says Carmen, who was diagnosed with multiple myeloma earlier this year.

Multiple myeloma is a type of cancer that affects plasma cells in the bone marrow. Healthy plasma cells help fight infections by making proteins called antibodies that help find and attack germs.

In multiple myeloma, cancerous plasma cells build up in bone marrow – the soft matter inside bones where blood cells are made. In the bone marrow, the cancer cells crowd out healthy cells. Rather than make helpful antibodies, the cancer cells make proteins that do not work, leading to complications.

The drug – daratumumab – offers a targeted treatment for myeloma. It works by targeting the proteins on the surface of cancer cells so that the immune system can recognise them and kill the myeloma cells. 

A spokesperson for the health ministry said that, at present, 95 patients are undergoing active treatment [for multiple myeloma]. There are 30 patients taking daratumumab.

“The protocol for oncology treatment is constantly changing and being updated. Decisions regarding what goes on the formulary [free medication] is a complex process and multi-factorial. The health ministry is in the process of constantly expanding and extending the formulary,” the ministry said when asked why the drug is not offered for free.

‘We were worried about the money’

But Carmen believes that such a drug – prescribed by oncologists at Mater Dei Hospital as a second-line treatment – should be made available. Suffering patients should not have to face financial worries in the first place.

“Cancer takes away a chunk of your life. My immune system is weak. We have to avoid crowded places. What saddens me mostly is that I can’t interact with my three young grandchildren as much as I want to. I’m in the process of retiring because doctors are recommending that I should not be around children due to my immunity.

What saddens me mostly is that I can’t interact with my three young grandchildren as much as I want to

“It hasn’t been easy and I’m not one to give up easily. It’s frustration. You tell your body: ‘come on, come on’. But there is a limit to how much your body can take. Over and above this, you don’t want to be worrying about the finances,” she says.

At the end of 2023, Carmen started limping and had a pain in her hip. Doctors initially told her it was an inflamed muscle, but further tests showed she had a lesion on the left femur (upper thigh bone). She was diagnosed with multiple myeloma.

Weeks later, her femur broke and she had to undergo a total hip and upper femur replacement.

In February, she started first-line treatment that includes chemotherapy. All this was funded by the state hospital. Things went well but then the progress slowed down and a team of specialists added daratumumab to her treatment regime. But this is not offered under the government formulary and costs €13,000 per one-month cycle. She needs, at least, two cycles.

“At one point, we were really worried about where we would get the money. Specialists gave us an application form for the Malta Community Chest Fund and we applied… In the meantime, we checked with my husband’s insurance – which he has been paying through work for over 20 years – and we were covered. We were lucky. But not everyone has health insurance. We want to bring awareness.”

She stresses that she found nothing but support and “top-notch treatment” when dealing with the MFCC and the staff at Sir Anthony Mamo Oncology Centre and Mater Dei Hospital.

The ministry spokesperson explained that the treatment for multiple myeloma depends on suitability for transplant. Those who are suitable get four to six cycles of chemotherapy and get transplanted in the UK, going on two maintenance chemotherapy sessions thereafter. 

Those who are unsuitable for transplant due to age and comorbidities get six to eight cycles of first-line chemotherapy and go on maintenance therapy.