€3,000 cancer meds are not on government formulary list

Mother of two Claire Ebejer was diagnosed with breast cancer in 2013. After the disease spread to her brain in 2014, she required specific medication to contain the tumour she suffers from. Now she has spoken out again to encourage a reform of the government’s medicines formulary list. 

Ebejer joined the Action for Breast Cancer foundation in pointing out that the list should be better suited to help people with different illnesses.

“I’m not pushing for this reform just for my own personal needs, but I can safely say that for people with the same condition as mine, the medication can truly help alleviate some serious concerns.”

“The list has not changed sufficiently to reflect modern medical developments in the treatment of cancer,” 40-year-old Ebejer told Malta Today. 

Ebejer, who was diagnosed with breast cancer in July 2013, requires a very expensive and specialized kind of medication, known as Lapatinib, a medication that isn’t currently found on the government’s formulary list.

“People prescribed this medication must therefore find ways to fund it themselves or seek help and support from charities like the Malta Community Chest Fund (MCCF),” she said.

The medication, she explained, can help her to have a good quality of life to be able to remain employable and subsequently contribute to the country’s economy. She added that the medication could also help her to manage take care of her family in a pro-active way.

“I understand the restrictions of such a system naturally,” she said. “Different groups lobby for their own interests, but the medication in question is already offered in 28 European countries including the UK and Italy among others.”

Ebejer, who has an aggressive form of breast cancer, explained that doctors had realised that the cancer had spread to her brain while she was still receiving treatment for her breast cancer.

“The first time I was diagnosed with cancer I wasn’t completely surprised,” she said, explaining that her mother had also been diagnosed with the disease at the age of 47.

“I would say she was more shocked than I was then, perhaps because she knew what I would have to go through, but seeing her get through it was almost reassuring to me.”

Her second diagnosis however, came as a crippling shock, particularly because she was told it could never be completely cured. She explained that she originally had two tumours in her brain, and that one had been removed after a major surgical operation, but that the other tumour couldn’t be operated on due to its close proximity to the motor region. 

“Doctors weighed out the possibilities and decided that surgery could risk leaving me paralysed, but that the right medication could contain the tumour and keep it from spreading to other parts of the brain,” she said.

Ebejer then added that doctors had to completely change the medication she was taking as the previous one couldn’t get through the blood brain barrier, which essentially meant that the tumour would continue to grow unchecked.

One of the few medications that can penetrate this barrier and work to curb the growth of the tumour, is in fact Lapatinib, a medication that cost Ebejer a whopping €3,000 a month.

“I could never have afforded the medication if others hadn’t stepped in to help me,” Ebejer said, adding that the MCCF had offered to fund part of the bill for the medications. However, when the company she works for heard about her condition, they offered to cover the medication for a fixed period of time. Ebejer therefore informed MCCF and insisted that the amount allocated to her be forwarded to others.

She added however that MCCF had also promised to assist her once and if her employer decided to stop covering the expenses of her medication.

She reiterated that she does not want financial assistance for herself at the moment, but that she wanted to raise awareness of its need for others.

“It’s at times like this that you get to appreciate the people around you who offer their help whichever way they can, sometimes even if they don’t know you,” she said.

She added that the Action for Breast Cancer Foundation had offered her invaluable support throughout her treatment, and that they had also helped her raise awareness about breast cancer.

“Besides the medication, I also underwent multiple sessions of full brain radio-therapy, which has somewhat shrunk the tumour,” Ebejer said, adding that her family helped her to keep up her hope and face the battle with the disease.

“My biggest concern when I was diagnosed, was the welfare of my thirteen-year-old twins,” she said. “Try as I might to prepare them for life, there are always things I’m afraid of missing out, and they don’t always seem ready to accept the reality of the situation.”

However bleak the situation looks, Ebejer is determined not to let it obscure her life.

“I’m still a very active person, both professionally, where I’m an HR manager at the company I work at, and in my local community,” she said of her role on the administration board of a local music school and band club.

She had always been open about her condition which is why she took it in her stride as much as she could. Ebejer even bravely laughed off the fact that she had experienced hair-loss three times in the past two and a half years. “However sad this all seems, I’ve learned to appreciate everything and every single day,” she said.

Had she not sought professional help when she did, things might have turned out much worse. “My message to everyone out there is to be as aware as possible that this can affect anyone, regardless of their gender or even their age, and to speak up as soon as you feel that something isn’t quite right.”