MY SISTER DESERVES BETTER: A First Nations Healthcare System Designed to Oppress

In my article regarding the PM’s Political Dilemma, I referenced the First Nations healthcare system as the basic of basics. I believe COVID-19 is going to test the First Nation health systems on-reserves. It will be interesting to see how the healthcare in remote communities will weather the COVID-19 storm. Hopefully, the federal government will act swiftly to provide the necessary supports during the pandemic. Thereafter, and in the post-mortem of the pandemic, proceed to improve and strengthen the First Nations healthcare system.

Before I begin my sister’s journey through various health services, her experience with the on and off reserve health care systems, I will give some context regarding the basic of basics First Nations healthcare.

I am a retired public servant. I was summoned home after being away for 39 years. This was when my home community elected me to serve as chief. I had a rude awakening when I went home to Kitchenuhmaykoosib Inninuwug (KI). Maybe I had turned a blind eye or ignored the KI’s health situation, ‘out of sight, out of mind’, over the years during my absence.
I am personally familiar with the healthcare system as delivered in urban Canada and Ontario. The healthcare system enjoyed by Canadians, the healthcare system that is not as equitable for First Nations on-reserves.

I do not intend to slight the dedicated professionals who come to the north but rather advocate for improved working conditions. Professionals coming to the north, are expected to deliver healthcare services in inadequate health facilities and to make do with the most limited resources. Thank you to the health care professionals.

When I retired, I purchased the federal health benefit plan. I am fortunate to have the federal health benefit plan to support my health care needs into my retirement. The health benefit plans most Canadians enjoy includes:

· On demand dental
· On demand optometry
· On demand chiropractic care
· Available personal physicians
· Referrals
· Easy access to specialists
· And too much more too list

The urban on demand health services I mention are sporadically scheduled to visit First Nation communities. The duration of their stay, is usually, on average one to two weeks for each visit. For example, the last document I saw regarding annual physician days for KI was 245 days to provide health services to approximately 1,200 people. Urban physicians normally offer 5 days of health care services to their patients. Local First Nations’ people do not have a voice or the luxury, in how their healthcare system is rolled out by the federal government. The people merely accept what they receive.

If there is an emergency, a person is flown out of the community, either by medevac or by scheduled flight. Northern patients are medevaced to receive enhanced medical service or medical procedures which are non-existent on-reserve.

My sister lives on the KI reserve, formerly known as Big Trout Lake. The travel distance one way to the urban hospitals for enhanced medical services is to: Sioux Lookout at 426 km; Thunder Bay at 607 km; and Winnipeg, Manitoba at 647 km. Emergency services, life saving treatments and on-going medical care for chronic conditions all hundreds of miles away.

Imagine, a patient must travel every 2-3 weeks of every month to receive chemotherapy. It’s wintertime 7 months of the year. The scheduled flight makes multiple stops before it gets the patient to their destination. In my sister’s case, she has been travelling since 2008. She is starting to feel the affects of her cancer, the chemotherapy and the exhaustion of constant travel. She is currently fighting her second round of cancer, and for her life.

My sister started feeling ill with the onset of cancer symptoms in 2006. For a year and a half, she visited the local nursing station. She was either seen by the nurses or by the visiting doctors. Since the local nursing station has limited diagnostic capability, my sister was sent out for testing multiple times to urban hospitals with diagnostic equipment. She was not diagnosed definitively until 2008, a year and a half after she first started experiencing and noticing unexplained symptoms.

It should also be noted, there is no continuity of health care in First Nation communities. The nursing stations are staffed by federal and agency hired nurses. The agency nurses change frequently. More often, the nursing stations operate below its staffing complement. When I was chief, I would refer to my community’s health care system as a parachute system.

How my sister found out she had cancer was not through a doctor to patient consult. She was having a colonoscopy, one of her many diagnostic assessments she endured. A nurse blurted to a colleague that the patient, my sister, had cancer and would need radiation treatment. This is what my poor sister heard as she was enduring the procedure.

I clearly remember receiving a call from my sister. She was totally devastated! All she could say was, “I have cancer. I will call you later.” This was earlier in the week when she called. Later that week, she was much calmer when she talked about her cancer diagnosis. From then on, she has endured many trips in and out of KI to receive surgery, follow up checkups and chemotherapy.

For about a week after each chemo session, she is exhausted. Her taste buds are affected, she is nauseous, requires much sleep, and tries her best to eat to sustain her well being. Once the chemotherapy levels off, off to work she will go and she will repeat this over and over again. She was quite a productive and dedicated worker all her life. She was employed in a child and family services organization for most of her career. She had to terminate her employment recently. The stress of treatment, travel and work was getting too much for her cancer ravaged body.

She received her first surgery in December 2008. She recovered from her initial bout with cancer after surgery and remained cancer-free until the return of her second bout of cancer. Healthwise, she would never to be the same again. She was readmitted into the hospital one week after her December 2008 cancer surgery for a fistula infection. Parts of her insides were removed, which became an administrative health issue and just as exhausting as chemotherapy.

After her first recovery, there were periodic follow up appointments with an oncologist. This meant she had to travel out of the community frequently. Her remission lasted until October 2016. The cancer returned the second time and she is battling it today. When her cancer was discovered the second time, the mass had grown. Even though she had frequent checkups, the new cancer growth was not discovered until the remission date mentioned.

The doctor informed her she had 1-2 years to live. That was 4 years ago. Even though my sister shows a strong outward personality, years of treatment, appointments, and travel, exhaustion and her emotional stamina is starting to get the best of her.

Aside from dealing with two bouts of cancer, she has had to deal with the First Nations and Inuit Health Branch (FNIHB) which is the administrative health issue referred to earlier. FNIHB is the gatekeeper of Non-Insured Health Benefits (NIHB), an approving authority for all First Nations across Canada for pharmaceutical, dental and optometry, transportation and medical supplies.

FNIHB hires clerical staff to receive and approve First Nation requests for NIHB support. The clerical staff follow the NIHB policy strict to the letter. It is not user friendly at all. It can be extremely challenging when a hospital prescribes medication and the drug is not on the FNIHB list, NIHB support will be denied.

My sister has had to get a series of NIHB approvals for the last 12 years. Each new medical occurrence is put through for NIHB approval. Even though, her health condition will not improve, there is a constant renewal of medical supplies from her health professionals- simply prescription refills. In order for her medical supplies to be received from NIHB, it first has to go through the cumbersome government administrative process -every single time she needs a refill on a prescription for medication or supplies. It is similar to checking for Unemployment Insurance monthly to confirm you need ongoing support. In my sister’s medical situation, it is common sense that her condition is indefinite. Why put her through an administrative burden to verify she continues to need NIHB support?

Nanehkatehnimohiiwehwin, an Oji-Cree word, that describes an authority that is beyond ones’ control and causes hardship and distress; an external authority negatively impacting one’s well-being. This is the state of First Nations healthcare- Nanehkatehnimohiiwehwin.

First Nation patients encounter numerous issues with FNIHB: from outright denials of medical assistance; having to call a senior authority in Ottawa with common sense as the next level of grievance; medication not listed by FNIHB against the national formulary complicates medical treatment plans; prolonged delays in receiving medications as there are no pharmacies in remote communities; missed specialist appointments due to unavailable seats on aircraft because NIHB bookings occur one week before the specialist appointments; or, the medical trip may be delayed by weather. When specialist appointments are missed, rebooking may take several months to a year.

Again, the question arises, why do patients with lifelong medical conditions, need to administratively update their prescriptions and supplies to FNIHB to continue receiving NIHB support? My sister’s medical condition is that she will continue to require medical supplies until she is not of this world. Is it not enough authority, her doctor, a certified professional, prescribes her medical requirements? This issue is raised because NIHB non-medical clerical staff in Ottawa will often overrule a qualified health professional’s authority!

I would like to demonstrate my sister’s frustration with the NIHB administrative issue. The medical supplies she requires are approved quarterly. There are times when there is an administrative error or omission. When this happens, my sister, while gainfully employed, would personally order her supplies from a pharmacy. It is an out of pocket expense, and transportation costs are above that as well. Again, be reminded, pharmacies do not exist in remote communities other than KI. Therefore, medical supplies are not readily available in the communities. The KI nursing station does not stock her supplies for emergencies. There is usually a long waiting time before northern remote patients receive their prescriptions or medical supplies. In the meantime, they must do without or make do whatever is necessary.

My sister, Phyllis, and her husband Ron. Taken at the beginning of March on her birthday as she was enduring a round of chemo in Thunder Bay.

Here is one horrific screw-up in an NIHB approval delay. My sister, on August 2019, ran out of her medical supplies while at home in KI. She had to improvise to try and keep the dressing clean and for the dressing to stay on. She ended up using feminine pads, and regular and gorilla duct tape to prevent leakage from her surgical opening. This is one extreme situation she has experienced and it likely will not be her last.

After completing a round of chemo in Thunder Bay, my sister returned to KI and went directly in to her 2-week COVID-19 pandemic community self-isolation and completed that on Sunday, April 12, 2020. She arrived in the community when mandatory self-isolation was a requirement of all returning community members. While in quarantine, a helpful nurse would visit her every second day to change her dressing without complaint. After her isolation, she was told to come to the nursing station for dressing changes early in the afternoons. Next communication came from the nursing station stating that she should attend the nursing station for dressing changes by 4 pm each day.

On April 14th, she went to the nursing station as requested. She waited and waited. A worker at the nursing station flagged a nurse to point out my sister had been sitting in the waiting room to be seen. Nurses kept bypassing her. When a nurse finally did get to her, he was annoyed and took his frustrations out on her. Within a few days, her dressing change times were changed twice and became a confused mess of patience service. The situation became more of a conflict. The frustrated nurse informed my sister, she did not need to come to the nursing station anymore, that she could start doing her own dressing changes at home. In the end, my sister left the nursing station upset and frustrated. She was given her medical supplies to take home.

How she was treated, by KI’s nursing professionals, was totally unacceptable! Who in Canada or Ontario, would accept such treatment? But, First Nations put up with this treatment most of their lives. Qualifier though, there are a select few professionals who do their jobs with professionalism.

Can you imagine, the inequitable and discriminatory treatment the First Nations encounter and endure just to receive health services? It’s only been in the last few years, my sister has shared with me, the frustrations she has had in navigating the health system and the NIHB support system. There is little to no health continuity in the First Nation communities as mentioned earlier. The communication from the health care givers are usually mixed as staff changes are continuous. The inequitable and discriminatory treatment is an added stress to her emotional well being. It prevents my sister from enjoying the quality of life she has remaining.

My sister has openly expressed, “…feeling hopelessness and helplessness all at the time. No sense of security being in this condition. It gets extremely difficult, complicated and challenging, not knowing who can or will assist and help me in my situation.”

Too often, we have seen hesitancy or indifference from leadership even when tangible opportunities have been brought forward. Among First Nations communities, poor healthcare is the norm and a low benchmark that has been the status quo for decades. Why? And who are all the accountable entities?

ommunity anchor for health, there are community nursing stations staffed by federal and agency nurses with periodic visiting professionals such as doctors, dentists, optometrists, mental health workers, etc. Then each First Nation has its program delivery with a health director and usually an assistant director. Most local communities are affiliated with a tribal council that employs a health director.

In the Nishnawbe Aski Nation (NAN) territory, there is a heath authority providing services to 33 First Nations. The First Nations, the tribal councils and the regional health authority, are also supported by NAN for advocacy, a provincial treaty organization (PTO). Governments also use NAN, as a convenient conduit to distribute program funds to the 49 First Nations and accountability for government funding. Then there is the health policy support at the provincial and national levels. In a nutshell, that is the administrative structure for First Nations health.

At the political level, there are the First Nations elected chiefs, the PTO Grand Chief and its Deputy Grand Chiefs. From there, the provincial and national corporate elected political positions.

If you take into count all the First Nations operational layers for health supports for its people, both administrative and political, excluding nursing stations and urban health facilities, there are at least 10 layers of First Nations involvement. Yet, there numerous patients falling between the health system cracks! Why?

There are 7 tribal councils and 49 First Nations within the NAN territory. If each tribal council and its communities were to select a medical deficiency, perfected the deficiency, became experts and shared it across the NAN territory, that would be one way of eliminating patient service gaps. It would be one empowering approach among First Nations of having to work within a colonial tribal council structure that was introduced in early 1980.

There was time, when I have heard the leadership make comments that improving healthcare for the people is needed immediately. The political process can take a while because First Nations fall between two jurisdictions, federal and provincial. On the other hand, there are administrative processes that can be explored to improve what currently exists. But there needs to be a unanimous decision, the laying aside of administrative and political ideals, for the betterment of advancing First Nations health care.

With COVID-19 upon us, immediate practical work is a great need. A coordinated approach is essential and necessary to go beyond the status quo of maintaining and delivering government administered programs. A strong cadre of First Nation health administrators and professionals need to work in sync with one another to transform existing health delivery. A gap analysis or the review of First Nations health studies would be useful to begin making action-oriented task items. NAN’s Health Transformation and its community engagement sessions is also receiving community health deficiencies.

NAN’s Health Transformation and its community engagement sessions with 49 First Nations and tribal councils, is going to take a few years yet. It will take years before any concrete, transformed health direction, is achieved. This COVID-19 pandemic has overtaken NAN’s Health Transformation. Face to face community engagements sessions is at a stall. Will future governments be as willing to continue funding the NAN Health Transformation initiative? It remains to be seen.

In the meantime, there are patients that will continue to fall between the cracks. First Nations patients cannot afford to wait for a seamless system to happen. First Nations health can be addressed through a unified administrative approach. The political process can work in tandem to advance the bigger picture of a new First Nations health system.

There has been enough talking around the table about challenges and deficiencies regarding First Nations healthcare. It is time to take action. It is time to reach for opportunities when they are presented instead of letting them float by. My fear is that the interest the government currently has with health transformation may wane as time progresses if measurable outcomes and improvements to First Nations healthcare aren’t achieved owing to reluctance among the leadership to unite as First Nations.

~ James Cutfeet