National Travel Assistance Scheme needs change cancer survivor, advocates say

Three-time cancer survivor Diane Merenia Hodge. Photo / Maryana Garcia

Cancer advocates are calling for an update to the National Travel Assistance scheme to reflect continued petrol price hikes.

The scheme currently reimburses patients at a rate of 28c per kilometre to access treatment. For the past five years, the number of patients applying for this support has been steadily declining.

The scheme’s reimbursement rate was last updated in 2009 when the average price of regular petrol was $1.98 per litre.

This week, the Ministry of Business, Innovation and Employment provisionally reported the average retail price of petrol in Auckland, Hamilton, Wellington and Christchurch was $2.52.

Fuel-finding app Gaspy recorded regular petrol prices in Rotorua on November 24 to be in the range of $2.39 and $2.59 per litre.

When Diane Merenia Hodge first applied for the scheme in 2007, the reimbursement rate was 20c per km and $75 per night for accommodation.

Hodge was first diagnosed with breast cancer at 49. At the time, the only thought going through her mind was: “Hey, you might die.”

In the next five years, Hodge battled three cancers. She received her second diagnosis, this time for uterine cancer, right on the heels of her first.

“That I might die was the first thing that hit my head and my heart as well. Everyone was collapsing around me,” Hodge said of her first diagnosis in 2007.

“It was quite emotional.”

Within the next three months, Hodge had three major procedures at Waikato Hospital to remove the cancers.

Then, three years later Hodge was diagnosed with breast cancer for a second time.

“It had spread to the lymph nodes in my arm as well.”

She was finally given the all-clear after a regular check-up in 2017.

Cancer survivor Diane Merenia Hodge now volunteers at the cancer support groups that helped her through her journey. Photo / Maryana Garcia

Today, the Rotorua-based mother of three, grandmother of nine and great-grandmother of six shared her story in the hopes improvements could be made to the financial support scheme that helped her access lifesaving treatment.

The National Travel Assistance Scheme or NTA provides financial support that covers travel and accommodation costs for patients who need to travel long distances or travel frequently for publicly funded specialist appointments or treatment.

The NTA scheme reimburses patients travelling more than 50km for at least six appointments within one month 28c per km for petrol and about $100 per night for accommodation.

“Any support is great and it was great to know there was support out there,” Hodge said.

Through her cancer journey, Hodge was grateful for the support of her family, Aroha Mai Cancer Support Services and the reimbursements provided through the NTA scheme.

Hodge said she was travelling about 210km each week to get to treatments and operations at Waikato Hospital for the initial operations.

She was shocked to find out that the NTA's current refund rate was 28c per km.

“That’s shocking. That’s just not fair.”

Hodge said changes to the NTA needed to be looked at.

“That’s a no-brainer.”

Hodge’s story comes as data released to NZME in response to an OIA request showed the Government’s total spend on the scheme has decreased each year since 2018.

According to the Ministry of Health’s policy recommendations report on the NTA, published in 2018 the scheme was funded at approximately $36 million per year from 2005. An additional $4.2m per year was allocated from 2009/10.

In 2018 the Government spent $35.7m in National Travel Assistance scheme payments. In the first seven months of 2022 that figure was $31.8m.

The number of claims being made to the fund had also decreased nationally over the past five years.

In the Te Whatu Ora Hauora o Toi Bay of Plenty district, there were 3049 NTA claims in 2018. This year there were 1955.

In the Te Whatu Ora Lakes district there were 2273 NTA claims in 2018. In 2022 there were 1019 claims made as of July 31.

Patients receiving financial support for travel from another provider such as ACC or Work and Income are not eligible for the scheme.

Hodge, who now volunteers at Aroha Mai and Bay of Plenty Cancer Support services, said a lack of digital literacy was a “huge barrier” for patients accessing support.

“They have to fill out the paperwork but not everyone has moko at home to help them print the forms out.

“So you’ve got to remember to get the forms from the hospital before you leave and then you’ve got to fill them out like every day.”

Aroha Mai Cancer Support Services founder Bubsie MacFarlane. Photo / Maryana Garcia

Aroha Mai Cancer Support Services founder Bubsie MacFarlane said for at least the past three years she attributed the decrease in claim numbers to Covid-19-related delays in the health system.

“Things are just getting back on target now.”

For mature people, MacFarlane said the scheme was “very important”.

“A lot of older people are on their own so it’s hard for them to get transport.

“They’re [also] quite lonely and they’re a bit frightened, and going into hospital is a bit threatening.”

MacFarlane said one of the weaknesses of the scheme currently was the length of time patients often needed to wait for refunds to be processed.

“They have to wait about two or three weeks. I think families who have a loved one diagnosed with cancer are just surviving.”

MacFarlane said the long processing times could mean loss of income for families with only one breadwinner.

Cancer Society chief executive Lucy Elwood said the number of claims being made did not reflect the need for assistance.

Elwood believed one reason behind the decline in claim numbers was lack of awareness.

“There’s a really poor job being done of advertising the fact that NTA is available.

“Patients are never told that they are eligible and the application process is quite difficult as well.”

Cancer Society chief executive Lucy Elwood. Photo / Supplied

Elwood said a lot of patients are really hurting, particularly due to cost of living increases and the scheme's eligibility criteria didn't cater for all needs.

“My mum lives in Ōpōtiki. If she needed treatment, there are some clinics that could be available for her in Whakatāne one or two days a week.”

But in that scenario, Elwood said her mother would not qualify for the scheme's support as the distance between Whakatāne and Ōpōtiki was not great enough.

“It can still be quite a substantial cost and difficulty for whanau to access treatment when they don’t have to travel significant distances.

“But fewer people are qualifying for chemotherapy at shorter distances.”

Elwood said it helped that more specialists were travelling to regions periodically but the NTA's eligibility criteria overlooked the financial burden on families.

“It’s terrible, the per kilometre refund rate from memory is 28c. That rate is woeful.”

Elwood said the Cancer Society hoped the shortcomings of the NTA could be more easily addressed by Te Whatu Ora.

Elwood said she would like to see an update to the NTA take into account parking costs at city hospitals and an increase in accommodation funding.

“Patients with cancer and their loved ones are already going through a difficult time as a family and the goal of the health system is to improve health.

“We need to think more broadly about how financial stress can impact their health.”

A Te Whatu Ora Health New Zealand spokesperson said the organisation appreciated the struggles some families were experiencing to travel to receive healthcare.

“We are aware of the urgent need to review the National Travel Assistance Scheme to ensure it is fit for the purpose it was established for – to ensure equitable access to health services for all sections of the population.

“This is one of many significant issues that need to be considered as we work to modernise our health system.”

The spokesperson said Te Whatu Ora was committed to building a national health system that is coordinated, equitable, and sustainable.

“As part of this work to improve healthcare pathways, Te Whatu Ora is working with districts to consider how we can improve access to services.”

Te Whatu Ora Hauora a Toi Bay of Plenty chief operating officer Bronwyn Anstis said it was too soon to say definitively why there might have been a decrease in National Travel Assistance claims so far in 2022, though Covid-19 restrictions have likely played a significant part.

Anstis said local service provision of radiotherapy and increased capacity in renal dialysis also meant some patients no longer had to travel to access those services.

A Te Whatu Ora Lakes spokesperson said the provision of services such as a CT scanner in Taupō Hospital and increased capacity in the renal dialysis unit in the Lakes District reduced some locals’ need to travel.