A journey not for the faint of heart| By Pisai Gumar

51170924_399043800903266_8733359119269888000_n

It is no faint hearted human’s walk to interior of  Kokosan & Damet villages. The journey took over two days beginning at Torowa, Upper Erap, Nawaeb District  in Morobe.

The villages  share inter-district borders with Sapmanga in  Kabwum & Wantoat.

I walked, walked & walked. Up & down steep mountains, around & around steep cliffs, down & across fast flowing streams that find their way crashing down into Erap River  and  gushing down against huge boulders to marry with Markham River.

Through the  green coffee gardens decorated by red berries, I kept walking. In some coffee  gardens, the aromatic perfume from newly blooming   flowers filled my nostrils.

The smells kept up my strength and kept my  mind awake, although my ankles were  already exhausted. My toenails  and the  soles of my feet rubbed against rocky pathways causing  blisters.  Blood oozed. My feet trembled  and my  body felt like it was about to fall down when krusako leaves trapped my legs. 

Yet I pursued this interesting experience for four  reasons: 

1. To experience & explore hardships in remote areas and meet people who struggle to live with it.

2. See the source of mighty Busu & Erap Rivers that split & find their own ways down… The Busu ending at  Wagang (Sipaia) & Erap into Markham river.

3. To spend five  days  of  2016 Christmas  with  the Kokosang people.

4. To meet and  elder (pictured)  who I wrote about  two years earlier in mid 2014.

 I read the two daily newspapers each day  and  feel a hole  in my kind heart, when politicians make a  mockery of the people   saying:  “…The health delivery system is okay… drugs & TFF, school materials are reaching schools…” Or   “…we’ve committed this much to construct this/that road. It will improve/develop people’s wellbeing…”

In actual fact, the picture depicts real struggles in our rural Papua New Guinea.

Many still haven’t seen a vehicle tyre, nor even the tyre tracks on mud.

One wonders how the mothers give birth.   Which aid posts do they go to for family planning?  Where do kids go to school?

Despite the odds, you will find  Church buildings t in the middle of all these villages.

God Bless my heart for Morobe & Papua New Guinea!

Cancer treatment: Breaking down the financial costs to PNG families

pppMany Papua New Guineans don’t know about  the cost of cancer treatment until one member gets sick.

The diagnosis alone is problematic.  In rural districts and outstations, many community  health workers are not equipped  with the awareness which would trigger a referral to a major hospital.

But that is just one problem.

Take for example, a place like Baindoang in the Nawaeb District of Morobe province.  It is only accessible by plane.  A young mum with  the early stages of cervical  or breast cancer will not be able to get  the proper diagnosis until the disease is in its late stages.

If the community decides to send her to Lae,  they will have to raise  at least  K2000  for airfares and treatment in Lae City. It is big money for a village community.   There is no certainty of the time it will take for them to remain in the city.   I’ve come across wives separated from their husbands and children for weeks and months.

Many give up and die lonely deaths surrounded by strangers who become family.

Many are left with no means of talking  with their families either because of the lack of mobile network coverage or no means of buying a plane ticket back home.

There are unclaimed bodies at the Angau hospital morgue. Some came from remote outstations.

For urban families, access to health care is relatively better.  But still not good enough.  One person sent me a message on Facebook telling me how his sister died while waiting for the test results of tissue samples that had been sent to Port Moresby.

When the tests are positive for cancer and the radiotherapy option is suggested, the families will have to start rising upwards of  K150,000 if the treatment venue is in the Philippines or Australia.  It takes a lot of families and whole communities to raise that money.

If your family has a good number of siblings, aunts and uncles  who are in formal employment, the burden is relatively easier. If not, a public appeal is put out.  Old school friends, colleagues or sports club team mates come to help raise funds.

The money is used for airfares, passports, accommodation, food and treatment.

Today, I learned that a CT scan used for cancer detection costs an average of  K4000 at private hospitals for one session.  How many families can pay K4000 without even remotely  thinking of the cost burden?

In Papua New Guinea,  palliative care – the process of making a cancer sufferer comfortable in his or her last days  through medication – is almost nonexistent in the public health system.

Traditionally, that part of care is done by the family.  But with the breakdown of family structures, care is heavily reliant on the family’s financial resources.

Also today, I learned that a pack of four vials of morphine costs K100.  For a cancer patient the family needs to spend K100 a day to ensure some level of comfort for their loved one.  That’s K700 a week, K1400 a fortnight and K2800 a month.

I’ve been told more than once by health authorities not to ‘sensationalize’ the cancer treatment problem because it affects a relatively  small number of people compare to HIV, TB, typhoid and malaria.

My point has always been that cancer is not only a health burden, it is an economic and financial burden that affects much more than just the patient.

We need to look honestly at the realities that exist.

Overseas cancer treatment has become the biggest financial burden on PNG families

cancer 2

On Friday,  I asked the Planning Minister,  Richard Maru, what he thought about the  lack of cancer treatment facilities in Papua New Guinea.  The questions was directed to him as Planning Minister and a member of the government.

Minister Maru  didn’t have all the answers  but he said he would bring the Health Minister, Dr. Puka Temu,  with him to Lae  on his next visit.

Cancer affects a relatively small population of people in Papua New Guinea compared to other illnesses like  malaria and TB.  But it is  one of the most expensive to treat and puts an enormous  financial burden on an increasing number of families in papua New Guinea.

Like many others have also been affected, cancer has also affected Richard Maru’s family.   In the next sitting of Parliament, he says he  will be supporting the legislation  to enable the revitalization of the National Cancer treatment center in Lae.

The disease doesn’t discriminate.

Every week,  Papua New Guinean families  are fundraising to send a loved one overseas.  For one family, I know of, they have decided  to make life comfortable for their dear mum, because the cancer is already  in its advanced stages.

Every family affected by cancer needs to raise up to K150,000 to go to the Philippines  for treatment. It is the ‘cheapest’ option for them.  Of course,  many of the costs are presented in US dollars.  The low value of the Kina doesn’t help at all.

The costs are relatively higher in Australia depending on where you look and what you want.

An industry has developed on the back of suffering Papua New Guinean families willing to pay big money.  “Medical tourism,” they call it.  Small Philippine SMEs are offering transport options,  important contacts, accommodation options and more depending on your budget.

It is absolutely disgusting when this is allowed to happen.

Why has it taken seven years for Parliament to  pass  that  legislation governing the use and transportation of  cobalt, the radioactive material used in cancer treatment?  Is it because of a lack of understanding?  A lack of will?

Families who don’t have K150,000 have to work very hard  to raise it.  There is a general feeling of weariness but  people still find the strength to go on, to ask other families to support the fundraising activities for their mother, sister or daughter.

A large number of men also need the same kind of help. But they get less attention.  Maybe many more continue  will turn a blind eye to this lingering problem until it comes knocking on our doors.

 

PNG’s only radiation machine won’t work — and the consequences can be fatal (Natalie Whiting ABC)

Saulo Honorobo was a teenager when he first met his wife.

For 30 years he and Marggeret built a life together. They moved homes, they had two children, Marggeret started a small business and Saulo became a community leader.

Then a tumour started to grow on Marggeret’s face.

If Saulo and Marggeret had been born in another country, their story would likely have been different.

But in Papua New Guinea, there is currently no radiotherapy available for people who have cancer.

A tumour is seen growing on Marggeret Honorobo's nose.

“The doctor discussed that the only way she will survive is she has to go to have that radiation therapy overseas,” Mr Honorobo said.

The country’s only radiation machine has been out of action for more than two years.

The International Atomic Energy Agency has offered to supply the radioactive sources needed to get the machine back up and running, but before it can do that, the PNG Government has to pass legislation to meet nuclear safety regulations.

So Saulo Honorobo watched as the tumour grew, disfiguring his beloved wife.

They considered selling the family home to try to get some of the money they needed.

“[From] January for six months it started to grow, so we started to ask if [the doctor] could do a referral letter so that we could sell the property and ask for donations and take her to the place where she can get [radiotherapy],” Mr Honorobo said.

But Marggeret died first.

That memory brings the stoic Saulo Honorobo to tears.

“Life has become very tough,” he said.

“I’ve got two children, she’s the only one that looked after them, not me, but I am the only one taking care of them now.

“I don’t need anyone to look after them.”

He has vowed to stay in the city of Lae where they have been living, rather than return to his home village, so that his children can study.

“My son is a bright student in secondary school now, he is grade nine now, a good bright student and my daughter will do her elementary school,” he said.

Like being a gardener ‘but they haven’t given you a spade’

At the National Cancer Clinic at the Angau Hospital in Lae, where Marggeret spent some of her final days, Alfred Mel moves through the wards with great ease and familiarity.

The young doctor stops regularly to chat with visiting family members and still manages to make patients laugh, despite the grim circumstances they all find themselves in.

But when questioned about the lack of radiation facilities, there is a sense of helplessness.

“I tell my patients it’s like being a gardener and being told to go to the garden, but they haven’t given you a spade,” he said.

“You know that you can plant the stuff and make it grow, but if you don’t have the spade, who’s going to break the soil?”

Radiotherapy is one of the most common and effective forms of cancer treatment, especially for cervical, throat and mouth cancers, some of the most common forms of the disease in PNG.

The cancer clinic feels more like a palliative care ward.

Early diagnosis is also a major problem in PNG.

Education campaigns are underway to try to ensure people seek help before the cancer is too advanced, but for a country where many people live in remote villages, it is difficult.

Dr Mel said it was especially hard when patients were in the early stages and should have a good chance of beating the disease.

“It’s terribly frustrating and it makes coming to work difficult,” he said.

“It makes talking to patients even more difficult because a lot of my job now is telling patients, if I had this, it would be different.”

He knows that most of his patients will not be able to afford to travel overseas for treatment.

“For 85 per cent of the population, the absence of treatment in country means that they will die, that’s the sad reality of it,” he said.

100 patients sent home to die in a year

In one of the wards, Dr Mel stops to speak to Philomina Isac.

She sits up in her bed and smiles. She has four children and cervical cancer.

“Most of the patients I came with, most of them died,” she said.

“I am the only one now, all the men and women already left us.

“I am here, I say God is helping me.”

Doctors are doing what they can, giving chemotherapy when radiotherapy, or a combination of the two, would be better.

Ms Isac is receiving chemotherapy and is trying to stay positive.

“I don’t want to think too much about it, I want to live each day as they come,” she said.

“Plenty of people thought of dying and they died.

“I get afraid of thinking too much, that maybe I might take my own life just from thinking too much, I am just at peace and waiting.”

John Clarke from local charity, the Cancer Relief Society, said a lack of action from the Government was killing people.

“Last year alone there were 101 patients who had to be turned away because they couldn’t be given cancer treatment,” he said.

Ms Isac is hoping things change.

“I want to say that if the Government can help quickly, please they must try, because the lives of people — it’s like, you close your eyes and wake up, one dies,” she said.

“You close your eyes and wake up, one dies.

“So, I want the Government to help, I pray all the time that God will help us one day.”

Developing countries carry the burden of cancer deaths

The PNG Health Minister Sir Puka Temu has conceded it has taken too long to pass the legislation required to allow the radioactive sources to be brought in so the radiotherapy machine can be used again.

“Over the last three years, commerce and industry, health and now defence has come in as well,” he said,

“We’ve basically concluded those consultations and then we should be able to have the bill passed.”

The legislation has been approved by cabinet and will now be voted on in Parliament.

“We are addressing the cancer issue — it has been a difficult five years,” Sir Puka said.

By 2030, the World Health Organisation expects that 70 per cent of all cancer deaths will be in developing countries.

The stagnant radiation machine is not the only problem facing PNG when it comes to cancer treatment.

On the morning we visit the hospital, four patients have already been turned away because of a shortage of chemotherapy drugs.

The vast majority of the chemotherapy drugs the hospital does have were purchased and supplied by the Cancer Relief Society, not the health department.

The country is also struggling to recruit a radiation oncologist.

Despite this, Dr Mel, who is a clinical oncology registrar, said he could operate the radiation machine until an oncologist was found.

Dr Mel said he would like to see more funding for cancer treatment, but knew that other areas of health like HIV/AIDs and tuberculosis were also in desperate need of financial help.

Health spending was cut by 2 per cent in real terms in last year’s budget, but Sir Puka said that was manageable and denied the health system was in crisis.

The current cancer unit in Lae is being upgraded with assistance from the Australian Government and the health minister said the PNG Government was also planning to build a new cancer treatment centre in Port Moresby.

“If things go well towards the end of this year, we should have the two centres,” he said.

“We are looking at newer anti-cancer instruments, like a linear accelerator, to provide better therapy for our cancer sufferers.”

But that will likely be too late for patients like Philomina Isac.

Guilt and grief, Lae journalist, Frankiy Kapin, writes about a friend who died of cancer

img_3542 (2)
21-year-old Ruth Kaupa passed away on January 12, 2019

I was woken up on Sunday morning the 12th of January 2019 by a phone call and the familiar voice  struck me.

And instantly,  rushed in that guilty feeling. My heart broke, yet how was I supposed to feel the grief when I felt a haunting guilt.

The guilt of failing someone I have given hope. Someone who had become a friend, a sister and family.

I never thought I would choose this path nor did she choose me.  But I found her and found it within my heart to accept and take on a challenge.

Now it’s all coming back to me. I am haunted by this guilt.

Twenty-one-year  old Ruth Kaupa had lost her battle to breast cancer at around 5am in the early hours of that Sunday at the Angau hospital.

Ruth was surrounded by her  immediate family members, closed relatives and friends holding hands as she slowly closed her eyes.

I met Ruth last year around June-July and did  my first interview with her and both her parents at their home at Kamkumung in Lae.

I am not the cancer specialist or some medical practitioner.  I began reporting  reporting about cancer in PNG three  ago and over that period I acquired  some understanding  of the problem and the treatment options available in PNG.

Some cancers are  treatable.  But in PNG treatment is lacking simply due to inadequate facilities.

If cancer  is detected early,   the chances of cure  are better.   Late diagnosis resulted in death.

There is a big  ‘cancer awareness gap’ in PNG even though  fundraising drives are held every year  in the name of cancer.

The PNG National Cancer Centre located at Angau hospital in Lae is managed from Port Moresby and is still struggling to get a permanent radiation oncologist since the last full time Radiation Oncologist was the late Doctor John Niblett  passed away in 2017.

The cancer centre established some 50 years ago had its in-patient wards demolished just earlier this month paving way for replacement.

But the few years of reporting  about cancer took a toll on me as I  blamed authorities for their lack of attention and immediate action.

Walking amongst the cancer patients in their wards was like entering a war torn hospital filled up with bomb blasted soldiers.

The pain is so visible in the patients eyes  that  some don’t  complain anymore.

The day I met Ruth changed my approach altogether.    I told Ruth and her parents that it was no point playing  the blame game and waiting…. We had to help ourselves.

If the ships don’t come ashore then let’s swim to them.

And so with backing of the Lae Media,  we took on the challenge for the Ruth Kaupa medical appeal.

Above all, it was Ruth that made that  decision to be the face of a media campaign for better cancer treatment in this country. Not just for her but for every other women and girl out there.

Ruth’s father Brasty Kaupa recalls saying:  “Although Ruth is gone, there are other Ruth’s out there and this is the story  of cancer that every women needs to know and  be prepared.”

Earlier in the week on Sunday after receiving the news of Ruth’s passing,  I sat down trying to  find the starting lines to my story. It was all blank, blank and blank. Not even some two to three words connected. The sentence construction took me all day and all night until 3am the next morning. Still not a one line sentence but just one word. It was guilt.

I figured this must not go on making me become a zombie finding a real purpose.

The few days of hopeless slumber following Ruth’s passing really pushed me to question myself.

What did I do wrong?

Have I failed Ruth?

I questioned myself and the grief that I am going through. How was I supposed to be grieving for someone who I failed?

My grief has now been haunting me because I chose to take on the fight instead of pointing the finger to someone else and expecting them  to do it.

Would I have walked away a long time ago?  Then I  never would have come across this road with Ruth. But there are others like Ruth who are yet to discover the cancer they have. Others have passed away or are now in pain and silently suffering  as they wait to die eventually.

But for how long would this go on? Something needs to be done!

Authorities continue to point out that cancer affects a  minority  of the country’s population so is the allocation of funding, resources and facilities is  proportionate to the affected population.

Cancer treatment is very expensive.  Only a small  minority affected can help themselves.

I remember Ruth’s determination and spirited smile.  She was ready and wanted to take on the fight. To be the face of  the campaign.  But at the back of her mind,  it was the path PNG must take.

What many saw  was that we were raising funds for Ruth to go for radiotherapy treatment overseas. Of course,  it was.

We were running against time and  everyone were being  pushed to the limits and it was Ruth’s parents, Brasty and Bogel Kaupa who stood out the most.

It’s what every right thinking father and mother would do for their sick child.

Maybe I got too close.  I would admit that,  at some point,  I put myself in the shoes of Ruth’s family asking myself, what if that was my daughter?  my sister? or my mother? What would I do?

You tell me if I was wrong and you may be forgetting what it is like to be human.

All along,  Ruth showed great  determination. She was intelligent, respectful and knew  what was coming ahead.

Her sincerity and appreciation to everyone who assisted her was overwhelming.

It was  her determination to make it known to every women and girl in PNG that the cancer services in this country are inadequate.  While we go on blaming the government and concerned authorities we might as well start helping ourselves.

Ruth is the second cancer patient that I have tried to help seek further treatment overseas. To  be honest I was not looking forward to what happened. I had already been there and it was not happening again.

But visiting Ruth’s parents during the week and the conversing made me accept Ruth’s fate that though she didn’t deserve to lose her life in such way. Only God has the answers.

What you and I and everyone need to get out from Ruth’s struggle is not her death, but the life she lived.

 

Last year businessman and former Madang Governor who spoke following the passing of Dr Niblett said back then when he was health minister,  the cancer unit was  run down. He said there was reluctance within the DoH to really support the cancer unit.

“When you consider the money being used to build   freeways, hotels, fund events mainly in Port Moresby,  it is hard to come to terms when there is a real need for specialized treatment in PNG, particularly outside Port Moresby.   This does not just cover cancer, the shortage of dialysis machines is another concern along with the trained specialists and consumables needed to provide treatment in PNG where many people have the choice of dying earlier or if they can raise money, seek treatment abroad,” Sir Peter Barter said.

We see and contribute to annual fundraisers by NGOs backed by reputable corporate houses in the name of cancer. Even the month of October is dedicated to cancer and where does all the money go?

Take a walk through the Angau Cancer wards and see  the cancer patients.     The pain and suffering of cancer is immense and  intolerable.

They are  family members,  friends and  loved ones who need your support and the same care as any other patient.

Coming this far with Ruth and her family  will forever be my guilty grief.

Rest In Peace Ruth Kaupa