Part 3: Cancer affects everyone
This is the final part of a three part special report on the plight of a PNG woman living with cancer and having to contend with a dysfunctional health system and high costs of drugs in Papua New Guinea.
Cancer affects family members as much as it does the patient, and as much as possible, Bertha did not want her family’s focus to shift solely to her when she was diagnosed.
When she first got the results of her biopsy, she sat her older kids down to explain to them what was happening. She wanted her children to continue being kids, and to enjoy their childhood without focusing all their attention on her.
It was a particularly tough time for her family, especially since they had only started getting used to their father not being around after a separation in 2019.
“It’s been very tough on them especially without having their father around as well…because he left us in 2019 and then in 2020 we were all just getting used to not having him around…I was trying to get the kids to go through that process when all of a sudden we’re all fine and then 2021 we get knocked with this.”
Bertha had to watch her kids grow up quickly without her because she spent more time away for treatment. Her eldest daughter who is now 21 has decided to stay home to help out with her younger siblings while their mother goes through treatment. In all this, the children are being encouraged to speak about what they feel while the family is going through the motions with their mum’s illness.
“I try as much as possible not to show any type of negative emotion in front of them. But it’s also good to cry and have everybody express how they feel and what not. So yeah, it’s been very challenging.”
The cancer health care experience
It has been a journey of discovery for Bertha as she walked hospital halls as a patient for the past two years.
The first thing she noticed at Port Moresby General Hospital was that cancer services were free. She was somewhat happy that cancer services were free however, then came the legacy issues of the country’s crippled health systems.
Her experience has been riddled with the usual PNG health care issues of bed shortages, expired drugs, drug shortages, broken down machines, topped with the high cost of specialist treatment that everyday Papua New Guineans are not able to afford.
“If someone is missing a particular drug, it’s either you wait until it’s made available at the hospital or you have to go and pay for it. And then sometimes at the pharmacies, it’s not always available…”
What’s worse for a patient is when the drugs needed aren’t available, and treatment is put on hold because of such issues.
Bertha expressed frustrations that despite cancer being one of the killer diseases in the country with more people being diagnosed every year, she feels that it is still not treated as a priority.
Her battle has allowed her to cross paths with other women who’ve also been diagnosed with breast cancer, whom she refers to as her ‘breast mates.’
Sadly some of the women she’s shared her journey with have lost their battle.
“It’s hard when you know patients are in the early stages, and it can be beaten, but then without the treatment that they need…it prolongs the illness and then the illness progresses and then they get to a stage where it can’t be treated.”
It has been difficult seeing people pass on from the same conditions. As Bertha expressed, there’s a sense of guilt that sneaks in knowing that these breast mates were on the same treatment, taking the same medication, but did not beat cancer.
Much of this hinges on delayed medical referrals, and the fact that Papua New Guinea does not have the facilities or equipment to effectively deal with cancer treatment.
“We still need more. We need the facility for them to be able to conduct more testing. Some of my tests, we’ve had to send to Australia to have done…like the PET scan, I need to have the PET scan done to see if there’s any spread to tissues. I can choose to remain here, but I don’t know what’s happening in my body.”
“Without all these facilities and what not, we’re losing people and like…my friends…we’re at a stage where we can be treated but because we don’t have these things.”
Therapy still unavailable in Papua New Guinea
Over the past few months and through the years, there have been an overwhelming number of medical appeals that are being posted on social media and distributed to the masses in the efforts to raise funds for medical treatment.
These are fundraising drives for sisters, mothers, daughters and friends who require radiation therapy – which has to be conducted overseas because it is not available in the country.
In 2016, the Lae Media fraternity aggressively reported on the plight of cancer patients in Lae, in the absence of a radio oncologist and a non-functioning cobalt machine. The cost of drugs was high – the fight to survive was expensive.
In 2019, the national parliament unanimously passed the Radiation Safety and Control Act 2018. In his speech, then Health Minister Dr Puka Temu said this would allow the use of highly radiation sources for cancer treatment.
One of the reasons why radiation therapy could not be performed in the country was because there were no laws governing the use of radioactive material.
Radio New Zealand (RNZ) reported the following quote by Dr Puka Temu.
“Today is a historic moment for parliament as all of us are aware the rise of cancer in the country and the suffering it has pose to many of our citizens, demands that the country provides for the right treatment.”
The National also quoted Dr Puka Temu saying, “because of the lack of a regulatory framework, Cobalt-60 which is a radioactive source necessary for cancer treatment could not be procured…”
“The Angau cancer unit had been using Cobalt-60 for cancer radiotherapy treatment but after it became a threat to other countries’ domestic security, laws around the procurement of Cobalt-60 became tougher…that is why it took a long time as we had to comply to international standards.”
This was a ray of hope, and a step towards having radiation therapy available in the country, but there are other processes involved as well.
Earlier this year, Post Courier reported gynaecologist and Deputy Chairman of the National Health Board, Dr Mathias Sapuri saying that the country registers 25,000 new cancer cases every year.
The fatality he said was high to poor screening and minimal health care.
“…We currently have ineffective screening programs, no radiotherapy, minimal availability of chemotherapy drugs, and no cancer prevention vaccination program.”
Dr Sapuri further added that “less than 3% of health service in PNG is dedicated to cancer compared to other developing nation at 15% and 80% for advanced nations”.
The issues highlighted by Dr Sapuri has been Bertha’s experience along with many other cancer patients.
In the efforts to address the issues with cancer treatment in the country, Kumul Petroleum Holding’s Limited signed a K10 million Memorandum of Understanding (MOU) for the construction of Modern Cancer facilities at the Port Moresby General Hospital, and a K15 million MOU with the Morobe PHA (Angau Cancer Unit) which enabled the recruitment of a Medical Oncologist, and the repairing of the Cobalt Unit at the cancer unit.
It has been almost 5 years since the Radiation Safety and Control Act 2018, but there are requirements that have to be met before Radiation Therapy can be practiced in the country.
According to a social media post on the Kumul Petroleum Facebook page, the organisation has paid fees to register Papua New Guinea to the International Atomic Energy Agency (IAEA), and the Morobe PHA and National Department of Health (NDoH), along with the National Institute of Standards and Industrial Technology (NISIT) are working to meet IAEA standards and requirements.
“As soon as we meet all requirements, IAEA will grant approval to bring in the new ISOTOPE for the Cobalt unit this year. Radiation treatment will be available to Papua New Guineans as soon as we fully meet IAEA requirements.” This was what was stated in the post on the 6th of February this year.
In the absence of radiation therapy in the country, Bertha and many other cancer fighters have to travel overseas to get this part of their treatment done, and it’s a costly exercise. She expressed her frustrations that many cancer fighters continue to die because many cannot afford to travel overseas for treatment.
“Radiation therapy is one of the most common and effective forms of cancer treatment and, and it’s hard when patients are in the early stages and they should have a good chance of beating it, but they cannot because most patients aren’t able to afford to travel overseas for treatment and the absence this treatment in the country means people…will die and that’s just the sad reality of it”.
How soon radiation therapy can be conducted in the country, is a question that needs to be answered.
Bertha needs help
Having done the surgeries and chemotherapy, Bertha urgently needs to undergo radiation therapy overseas to complete her treatment and is raising funds towards this.
Apart from the drugs she is taking for the hormones, she described her current state as being unprotected, because there’s nothing else being taken to slow or stop the progress of cancer.
She was advised that she could have two more sessions of chemotherapy done whilst the radiation therapy is being conducted, due to the prolonged period spent without any other kind of treatment.
A target of K75,000.00 has been set and various fundraisings are being conducted to meet this amount.
Cancer awareness T’shirts are also being sold, and donations can be made using this link – https://www.mycause.com.au/p/.
You can also follow her journey on her Facebook Page – The Mothership https://www.facebook.com/
If you would like to help Bertha beat breast cancer, please refer to the information given, and the flyers below.
