Aussie mum, 38, forced to fundraise for life-saving cancer treatment

A 38-year-old mum has been forced to fundraise for life-saving treatment after being diagnosed with a particularly aggressive form of cancer when 29 weeks pregnant.

Na’ama, from NSW, said she felt a hard lump in her right breast when she reached the end of her second trimester late Iast year.

The mum said she had been excited about experiencing a symptom-free pregnancy and figured if sore breasts was the only one, then it was fine.

“It was my first pregnancy and we didn’t know what to expect,” she told Yahoo News Australia.

Na’ama undergoing chemotherapy for cancer while pregnant.
Na’ama had to fork out more than $62,000 to try and 'stay alive' after being diagnosed with cancer. Source: Supplied

“Friends and family who felt it said it was probably a blocked milk duct.

“No one thought cancer — that’s the last thing on your mind when you’re pregnant.”

Na’ama pointed out the lump during an unrelated appointment with her general practitioner, and not long after she was sent for an ultrasound.

She underwent a biopsy a week later and doctors broke the news just days before Christmas that the large tumour was triple negative breast cancer (TNBC).

“You go in expecting to hear it’s a cyst and then you find out it’s a rare and aggressive breast cancer and you need to start chemotherapy right away,” the 38-year-old said, adding that the tumour “grew quite rapidly”.

Triple negative breast cancer does not have any of the three receptors — oestrogen, progesterone and HER2 — commonly seen in other breast cancer cells, according to the Breast Cancer Network of Australia (BCNA).

It accounts for about 15 per cent of all breast cancers and tends to be more common in women under the age of 40.

Triple negative breast cancer also grows faster, has fewer treatment options and a worse outcome, according to the American Cancer Society.

Na’ama with and without hair during her chemotherapy treatment.
Na’ama was told she had triple negative breast cancer just days before Christmas. Source: Supplied

Hefty out-of-pocket cost for life-saving drug

Na’ama underwent two rounds of chemo before doctors decided to induce her labour when the baby’s growth started to slow.

She gave birth in early February via an emergency caesarian and is continuing her treatment before undergoing a mastectomy.

“The only treatment options for triple negative is chemotherapy, surgery and radiation — there is no hormone therapy that can try and combat it,” the mum told Yahoo News Australia.

Given the rare cancer’s higher chances of recurrence, Na’ama began conducting her own research and speaking with other women with triple negative breast cancer.

“I’ve joined the worst club in the world but it has the best members,” she said.

It was then she learned about Keytruda (pembrolizumab), an immunotherapy that helps the immune system destroy cancer cells and has shown promising results when used in triple negative breast cancer clinical trials.

Despite it being approved for the treatment of some lung cancers and melanomas under Australia’s Pharmaceutical Benefits Scheme (PBS), it is not covered for triple negative breast cancer.

That means there is a hefty out-of-pocket cost for the drug, Na’ama said.

Na'ama wearing a headscarf while eating at a restaurant.
Despite Keytruda being approved for the treatment of some lung cancers and melanomas under PBS, it is not covered for triple negative breast cancer. Source: Supplied

New mum forced to fundraise for cancer treatment

Merck (MSD), the company that produces Keytruda, provides “compassionate” access to the drug after an initial up-front payment of just over $62,000, Na’ama said.

After that the treatment is free, not including an ongoing $80 compounding fee for each cycle.

With Na’ama on maternity leave and her husband Matthew taking leave at half pay to help take care of her and the baby, the price tag was simply more than the family could afford.

“You hear you have to have this massive financial cost to stay alive for the child that you just gave birth to,” Na’ama said.

The mum decided to go ahead with the “very promising” drug after speaking with two oncologists, but it wasn’t until her friends helped raise enough money through a GoFundMe page that she was able to gain access.

She’s now taking the immunotherapy treatment alongside her chemo.

“It’s a cancer that impacts young women who are having families and just starting their lives — the [cost] is a lot,” the 38-year-old said.

“A lot of women are having to self fund.”

Select cancers approved for cheaper Keytruda scripts

Vicki Durston, Director of Police, Advocacy and Member Support with Breast Cancer Network Australia, told Yahoo News Australia that BCNA “strongly supports” Keytruda being included on PBS.

“Triple negative breast cancer is often associated with poorer outcomes and these patients often have fewer treatment options,” she said.

“There is evidence of Keytruda having significant clinical benefit for those with both early and metastatic triple negative breast cancer.

“Breast Cancer Network Australia strongly supports Keytruda being progressed for subsidy on the Pharmaceutical Benefits Scheme (PBS) as soon as possible to allow patients to access this important treatment without the current financial burden.”

A spokesperson from the Department of Health said by law, the Australian Government “cannot list a new medicine on the PBS unless the independent, expert Pharmaceutical Benefits Advisory Committee (PBAC) recommends the listing”.

This 2015 photo made available by Merck shows the drug Keytruda. Source: AP
Merck, the company that produces Keytruda, provides “compassionate” access to the drug after an initial upfront payment of just over $62,000, Na’ama said. Source: AP

“The Government does not interfere with the PBAC’s considerations or process to develop recommendations to Government,” the spokesperson told Yahoo News Australia.

“The PBAC’s consideration is generally initiated by the sponsoring company responsible for a medicine applying for PBS listing. Pharmaceutical companies usually hold the scientific data and other information necessary to inform the PBAC’s consideration.

“Sponsoring companies are private entities that make their own decisions on the availability of their medicines.

“To date, the PBAC has not received any submission for pembrolizumab for the treatment of TNBC. The PBAC would welcome a submission for pembrolizumab for TNBC.

“The Government cannot compel private entities, such as sponsoring pharmaceutical companies, to apply for PBS subsidy.”

Currently, PBAC recommends Keytruda for for the following cancers:

  • Unresectable or metastatic deficient mismatch repair (dMMR) colorectal cancer

  • Resected Stage IIIB, Stage IIIC or Stage IIID malignant melanoma

  • Relapsed or refractory primary mediastinal B-cell lymphoma

  • Unresectable Stage III or Stage IV malignant melanoma

  • Stage IV (metastatic) non-small cell lung cancer (NSCLC)

  • Locally advanced (Stage III) or metastatic (Stage IV) urothelial cancer

  • Relapsed or Refractory Hodgkin lymphoma.

These patients can access the drug through PBS for $42.50 per script or $6.80 if they have a concession card, the Department of Health spokesperson said.

PBAC is considering the use of another drug called Trodelvy for the treatment of triple negative breast cancer. Its decision will be published on April 22.

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