Health inequity - what is it and how do we solve it?

Covid-19, our biggest health crisis in a century, has thrust healthcare into the spotlight. Over the next five days, the Northern Advocate will explore the role the health system plays in communities across Northland. Today, Adam Pearse examines inequity in our health system. Having to drive long distances for care and the high levels of diseases like diabetes are some of the challenges facing people in our communities. We also talk to the people trying to even up the imbalance.

Whangārei's Sonny Pere-Epiha, 59, was diagnosed with type 2 diabetes at just 15.

He is just one of thousands of Northlanders living with the disease, one of many serious health conditions which tells a story of Northland's debilitating health inequity.

In health, inequity references the poorer health experienced by different people. Broadly, the Ministry of Health says inequity can be recognised by how Māori, Pacific peoples and people from lower socioeconomic areas have poorer health and die younger than other New Zealanders.

In Northland, health inequity is arguably best shown through the region's rates of diabetes - a chronic disease that occurs when the pancreas is no longer able to make insulin, or when the body cannot make good use of the insulin it produces.

Its symptoms range from thirst and fatigue to infection and extreme hunger. However, the disease is often the root of other health problems such as blindness, kidney failure, heart attacks, stroke and lower limb amputation.

It is estimated Northland's diabetes rate is 20 per cent higher than the national average and third highest in the country behind Tairawhiti and Counties Manukau.

Areas with the highest rate of diabetes per 1000 residents are Ruawai (116), North Cape (106), Moerewa (99), and Hokianga North (89), Otangarei-Whangārei (87). Overall, the largest rates of diabetes are within the Mid North region.

Between 20-59 years of age, more Māori are affected by diabetes than non-Māori. However, the trend reverses for people over 60, which is reflective of how Māori often die younger than non-Māori.

Similar findings emerge from rates of cardiovascular disease (heart failure, stroke or ischaemic heart disease). An estimated 8 per cent of Northlanders live with some form of cardiovascular disease (CVD), significantly higher than the national average.

Areas with the highest rate of CVD per 1000 residents are Kamo West - Whangārei (127), Waipū (122), Mairtown - Whangārei (119), Rawene (119), and Regent - Whangārei (118).

As CVD typically occurs later in life, more Northland non-Māori have some form of CVD. However, when life expectancy is considered, a higher proportion of Māori are affected by CVD at all ages.

Diabetes and CVD are just two of many diseases or conditions which show health inequity in Northland. However, health inequity doesn't just reference the rate of disease, it also includes access to health services, resourcing and cost.

At 15, Pere-Epiha didn't take his diagnosis seriously. Even though his father died at 60 of the same disease, it wasn't until about three years ago when Pere-Epiha truly understood his condition and treatment.

Sonny Pere-Epiha is only one year younger than his father who died from his battle with diabetes at 60 years old - Sonny faces that same battle. Photo / Michael Cunningham

While he was quick to accept blame for not taking his diabetes seriously at a younger age, Pere-Epiha said he encountered many barriers on his journey.

"It's not that I wasn't interested [at 15] it's just the jargon, how [doctors] speak, it just really didn't interest me, I just wanted to get out of there because it made me feel inadequate, not understanding what they are talking about," he said.

"I'd say some of the fault was mine but over the past 10 years, it's been more so trying to get help, but you've got to know who and where to get the help from and that's where the problem was."

Every day, Pere-Epiha has to self-administer four injections of two different types of insulin as well as pricking his finger seven times, vigilantly recording his blood glucose levels in a booklet.

However, Pere-Epiha - also a chronic asthmatic who recently had heart surgery after a heart attack four years ago - said it has taken years to become confident with this process after struggling to find anyone who could help.

While he now receives support from the diabetes clinic in Whangārei, Pere-Epiha said just getting to appointments, which were only 10 minutes away, was difficult as he couldn't drive and rarely had someone who could drop him off.

"If that's happening to me here, imagine up north. There's nothing there at all and then they have to be dependent on coming here."

Sonny Pere-Epiha lives for his mokopuna, of which he has 10. Photo / Michael Cunningham

However, Pere-Epiha was quick to thank the diabetes clinic staff who gave great help with the resources available to them.

Now less than a year younger than his father was when he died, Pere-Epiha said he saw similarities in his own condition to his father's during his final days.

"We slept with him and I was in the next room and I could hear his breathing... and I'm like that sometimes, it's quite scary."

Pere-Epiha hoped by telling his story, other people would become more invested in their own healthcare and not contribute to Northland's health inequity.

"Take that step because it's important to your health, to your wellbeing.

"Doctors can only help you so far, the rest of the way you've got to help yourself which is what I've learned."

Access to health services is a critical part of inequity in Northland, given the region's geography.

Te Hapua's (from left) Adria Sucich, Donna Thompson, Moana Waenga and Ben Waitai speak about what is important to them regarding their healthcare. Photo / Michael Cunningham

Few know this better than Te Hapua residents. Only 21 minutes away from Cape Reinga, its roughly 100 residents travel incredibly long distances to receive healthcare.

Moana Waenga, a 32-year-old mother of five, has twins who were born prematurely and require regular health check-ups. Earlier this year, Waenga had to make the nearly eight-hour round trip to Whangārei Hospital just for two 15-minute appointments.

Moana Waenga, 32, has five tamariki and has had to travel eight-hour round to trips to Whangārei for 15-minute appointments. Photo / Michael Cunningham

Adria Sucich, whose daughter has down syndrome, said she was fortunate that her daughter's appointments had been transferred to Kaitaia Hospital. However, she remembered instances where she would drive to Whangārei, only to be told the appointment had been cancelled.

While Sucich said she was confident consulting with healthcare staff, she said the same was not true for many Māori.

"Sorry, but Māori people are quite shy people when it comes to asking somebody they don't know about things, especially in the health system."

"They don't know how to ask or they think if they ask, they are going to ask the wrong question or they might embarrass themselves."

Te Hapua's Adria Sucich is passionate about equitable healthcare. Photo / Michael Cunningham

Te Hapua kaumātua Ben Waitai said the community, like others, suffered poorer health due to their isolation, but were well-serviced by the Māori health provider Whakawhiti Ora Pai which was readily accessible.

Victoria Brown, one of Whakawhiti Ora Pai's health promotion team, said a main issue was that people were not aware that resources like money for fuel and accommodation, were available.

"[The DHB] doesn't tell you what you can get unless you ask," Brown said.

"It's sad that there's a lot of hidden things that [the DHB] can pay for."

Victoria Brown, who works with Whakawhiti Ora Pai in health promotion, walks through the Māori health provider's Te Hapua clinic. Photo / Michael Cunningham

Dr Ian Smit, who practices at Whakawhiti Ora Pai's Te Hapua clinic once a fortnight, said he noticed some people were simply unable to make appointments in Whangārei and Auckland, forgoing the healthcare they need.

"That's very common that people just find it unaffordable and they really try and stay and receive health within the Far North," he said.

"Many of the specialists don't appreciate the significant effort from the patient who had to get down there for that 10-minute appointment."

Dr Ian Smit, seen here talking with Lance at the Te Kao clinic, travels to Te Hapua every fortnight to treat patients. Photo / Michael Cunningham

While he accepted healthcare would always be hard to provide in such a remote area, Smit believed using telehealth solutions such as video consultations were crucial in reducing the financial burden travel put on whānau.

Ki A Ora Ngātiwai GP Kyle Eggleton, who saw patients along the east coast between Tuparehuia (Bland Bay) and Ruakākā, said inequitable healthcare was present in many communities in the area.

"Their closest doctor, not counting us, can be an hour away so that makes it really difficult to access healthcare when they need it and then there are issues around cost," he said.

Ki A Ora Ngātiwai GP Kyle Eggleton. Photo / Michael Cunningham

He noted people in the area had high health needs given the conditions in which they lived, citing the numerous patients who had no access to clean drinking water.

Kaitaia GP Kathryn Rollo said inequitable health outcomes were only made worse by last-minute appointment cancellations and the burden of cost for whānau who lived remotely.

"If people don't feel that you think their health is important, then they are not going to engage.

"We are dealing with a population that, by and large, doesn't have great health literacy so when it comes to advocating for themselves, you're not going to get it compared to the community in Paihia or Kerikeri who know the system and can voice their concerns."

Dr Kathryn Rollo at the Broadway Health clinic in Kaitaia. Photo / Tania Whyte

While health inequity was hugely impactful for Māori, it also affected Northland's disabled community.

Jonny Wilkinson, the founder of disability advocacy group Tiaho Trust, said it was fairly common for people with disabilities to experience discrimination while accessing healthcare, as well as facing barriers around building access.

Fifty-five-year-old Wilkinson, who was born with cerebral palsy, said there was anecdotal evidence people with disabilities would forgo accessing healthcare due to these barriers.

Tiaho Trust founder Jonny Wilkinson, 55, wants to see an equality in the resources provided to those with disabilities regardless of how they became disabled. Photo / Michael Cunningham

He also said there was significant inequity between the support provided to those born with their disability compared to those who were disabled because of an accident, the latter receiving a "gold-plated service", according to Wilkinson.

The last national disability survey in 2013 detailed that 44,000 Northlanders, 29 per cent at the time, had disabilities - the second highest region in the country behind Taranaki.

However, Wilkinson believed this data was out of date and required further study to establish better knowledge about Northland and New Zealand's disabled community, which would encourage more appropriate measures to address inequity.

A lack of solid data on prevalence and variety of disabilities in Northland was of great concern to Jonny Wilkinson. Photo / Michael Cunningham

One area where inequity was evident was in planned care. It is well-recorded Māori and Pasifika face delays in their surgical care, delays which weren't often faced by Pākehā.

As a result, several DHBs across the country have implemented or are considering schemes intended to "prioritise" Māori and Pasifika patients, counteracting the fact that Māori and Pasifika tend to seek medical help later than Pākehā, can develop cancer earlier, are made to wait longer for tests, and have more comorbidities (the presence of one or more conditions in addition to primary condition).

During alert level 4 lockdown, the Northland DHB implemented such a programme which applied to four areas of planned care - breast cancer, colonoscopy, cardiology and respiratory diseases.

Northland clinical director and bowel cancer specialist Dr Chris Harmston. Photo / Michael Cunningham

While the programme is in an early phase, Northland general surgeon Dr Chris Harmston was clear it would look to address inequitable surgical pathways for Māori - but not at the expense of non-Māori.

"I'll just say it exactly how it is, we are prioritising Māori patients and we are not ashamed about it," Harmston said.

"What we are not doing is prioritising Māori over non-Māori, if you've got a serious problem, it doesn't matter whether you're Māori or non-Māori, you'll be seen in a timely manner."

Harmston said the programme was in an information-gathering phase which would inform how the programme could be applied to different areas of planned care. This, Harmston said, would ensure equitable surgical pathways could happen naturally without the need for active correction.

Harmston, a bowel cancer specialist originally from England, said inequity was worsened by the distrust Māori had for a primarily European-style healthcare sector, something he had experienced first-hand.

"The distrust really shocked me, kind of hurt me in a way... because it made me realise that I wasn't trusted and not because it was me, but because of a historical and learned behaviour."

"So, my job is to behave in a manner that enables that trust and not be scared by that initial distrust. We need to do work with clinicians so they actually understand the problem."

Northland Dr Chris Harmston shows off Whangārei Hospital's new look endoscopy unit. Photo / Michael Cunningham

Harmston believed Northland's healthcare sector suffered as a whole thanks to chronic underfunding, but said this most affected Māori, Pasifika, and rural and economically disadvantaged communities.

While he saw a real desire to address inequity in health, Harmston said even new programmes were not providing the most equitable outcomes, citing the recent national bowel screening programme's screening age, which did not appropriately account for Māori who often develop bowel cancer earlier than Pākehā.

Northland general surgeon Dr Maxine Ronald (Ngāti Hine/Ngātiwai) hails from Waikare in the Bay of Islands and is one of only four Māori female surgeons in the country, and the only one to specialise in breast cancer.

Ronald, also the chairwoman of the Indigenous Health Committee providing support for Māori and Aboriginal surgeons and trainees, has been an invaluable asset to the programme, working to correct what she saw as a structurally inequitable system.

"I think we are structurally designed to provide inequity," Ronald said.

"The system is actually set up to be inequitable because it privileges one group over others."

Ronald believed this spoke to the influence of colonisation, white privilege and a distrust in Māori to self-determine their healthcare.

Northland general surgeon and breast cancer specialist Dr Maxine Ronald is one of four Māori surgeons in the country. Photo / Michael Cunningham

While she was confident no medical professional intended to promote inequity, Ronald said it was still a difficult subject to address.

"It can be very confronting but we have to acknowledge it and not pretend that it's something else. People don't intend to be racist but that's the result."

Despite the task ahead, Ronald said she was optimistic equity could be achieved in planned care, citing a recent breast cancer screening programme which, she said, found no difference in outcomes for Māori and non-Māori because structures were in place to ensure Māori achieved the same access to investigations and treatment as non-Māori.

Asked whether inequity would ever be truly abolished in planned care, Ronald said working to reduce inequity while believing inequity was permanent would only limit the potential to better outcomes for Māori.

"Would it be outrageous to think Māori would have better outcomes?

"We shouldn't lower our expectations because then we will only ever aim to be nearly as good, or not quite as good."