One in three of us will develop cancer at some point in our lives. But survival rates have improved to the point that two-thirds of those diagnosed live more than five years.

This extraordinary shift over the past few decades introduces new challenges. A large and growing proportion of people diagnosed with cancer are living with it, rather than dying of it.

In our recently published research we examined the cancer experiences of 81 New Zealanders (23 Māori and 58 non-Māori).

We found survivorship not only entailed managing the disease, but also “wrangling” a complex health system.

Surviving disease or surviving the system

Our research focused on those who had lived longer than expected (four to 32 years since first diagnosis) with a life-limiting or terminal diagnosis of cancer.

Common to many survivors’ stories was the effort it took to wrangle the system or find others to advocate on their behalf, even to get a formal diagnosis and treatment.

By wrangling we refer to the practices required to traverse complex and sometimes unwelcoming systems. This is an often unnoticed but very real struggle that comes on top of managing the disease itself.

The common focus of the healthcare system is on symptoms, side effects of treatment and other biological aspects of cancer. But formal and informal care often falls by the wayside, despite being key to people’s everyday experiences.

The inequities of cancer survivorship are well known. Analyses show postcodes and socioeconomic status play a strong role in the prevalence of cancer and survival.

Less well known, but illustrated in our research, is that survival is also linked to people’s capacity to manage the entire healthcare system. That includes accessing a diagnosis or treatment, or identifying and accessing alternative treatments.

Survivorship is strongly related to material resources, social connections, and understandings of how the health system works and what is available. For instance, one participant who was contemplating travelling overseas to get surgery not available in New Zealand said:

We don’t trust the public system. So thankfully we had private health insurance […] But if we went overseas, health insurance only paid out to $30,000 and I think the surgery was going to be a couple of hundred thousand. I remember Dad saying and crying and just being like, I’ll sell my business […] we’ll all put in money. It was really amazing.

Assets of survivorship

In New Zealand, the government agency Pharmac determines which medications are subsidised. Yet many participants were advised by oncologists or others to “find ways” of taking costly, unsubsidised medicines.

This often meant finding tens of thousands of dollars with no guarantees. Some had the means, but for others it meant drawing on family savings, retirement funds or extending mortgages. This disproportionately favours those with access to assets and influences who survives.

But access to economic capital is only one advantage. People also have cultural resources – often described as cultural capital.

In one case, a participant realised a drug company was likely to apply to have a medicine approved. They asked their private oncologist to lobby on their behalf to obtain the drug through a compassionate access scheme, without having to pay for it.

Others gained community support through fundraising from clubs they belonged to. But some worried about where they would find the money, or did not want to burden their community.

I had my doctor friend and some others that wanted to do some public fundraising. But at the time I said, “Look, most of the people that will be contributing are people from my community who are poor already, so I’m not going to do that option”.

Accessing alternative therapies, almost exclusively self-funded, was another layer of inequity. Some felt forced to negotiate the black market to access substances such as marijuana to treat their cancer or alleviate the side effects of orthodox cancer treatment.

Cultural capital is not a replacement for access to assets, however. Māori survivorship was greatly assisted by accessing cultural resources, but often limited by lack of material assets.

Persistence pays

The last thing we need when faced with the possibility of cancer is to have to push for formal diagnosis and care. Yet this was a common experience.

One participant was told nothing could be found to explain their abdominal pain – only to find later they had pancreatic cancer. Another was told their concerns about breathing problems were a result of anxiety related to a prior mental health history, only to learn later their earlier breast cancer had spread to their lungs.

Persistence is another layer of wrangling and it often causes distress.

Once a diagnosis was given, for many people the public health system kicked in and delivered appropriate treatment. However, experiences were patchy and variable across New Zealand.

Issues included proximity to hospitals, varying degrees of specialisation available, and the requirement of extensive periods away from home and whānau. This reflects an ongoing unevenness and lack of fairness in the current system.

When facing a terminal or life-limiting diagnosis, the capacity to wrangle the system makes a difference. We shouldn’t have to wrangle, but facing this reality is an important first step.

We must ensure it doesn’t become a continuing form of inequity, whereby people with access to material resources and social and cultural connections can survive longer.

Kevin Dew, Professor of Sociology, Te Herenga Waka — Victoria University of Wellington; Alex Broom, Professor of Sociology & Director, Sydney Centre for Healthy Societies, University of Sydney; Chris Cunningham, Professor of Maori & Public Health, Massey University; Elizabeth Dennett, Associate Professor in Surgery, University of Otago; Kerry Chamberlain, Professor of Social and Health Psychology, Massey University, and Richard Egan, Associate Professor in Health Promotion, University of Otago

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Attention deficit hyperactivity disorder (ADHD) is a condition that can affect all stages of life. Medication is not the only treatment, but it is often the treatment that can make the most obvious difference to a person who has difficulties focusing attention, sitting still or not acting on impulse.

But what happens once you’ve found the medication that works for you or your child? Do you just keep taking it forever? Here’s what to consider.

What are ADHD medications?

The mainstay of medication for ADHD is stimulants. These include methylphenidate (with brand names Ritalin, Concerta) and dexamfetamine. There is also lisdexamfetamine (branded Vyvanse), a “prodrug” of dexamfetamine (it has a protein molecule attached, which is removed in the body to release dexamfetamine).

There are also non-stimulants, in particular atomoxetine and guanfacine, which are used less often but can also be highly effective. Non-stimulants can be prescribed by GPs but this may not always be covered by the Pharmaceutical Benefits Scheme and could cost more.

How stimulants work

Some stimulants prescribed for ADHD are “short acting”. This means the effect comes on after around 20 minutes and lasts around four hours.

Longer-acting stimulants give a longer-lasting effect, usually by releasing medication more slowly. The choice between the two will be guided by whether the person wants to take medication once a day or prefers to target the medication effect to specific times or tasks.

For the stimulants (with the possible exception of lisdexamfetamine) there is very little carry-over effect to the next day. This means the symptoms of ADHD may be very obvious until the first dose of the morning takes effect.

One of the main aims of treatment is the person with ADHD should live their best life and achieve their goals. In young children it is the parents who have to consider the risks and benefits on behalf of the child. As children mature, their role in decision making increases.

What about side effects?

The most consistent side effects of the stimulants are they suppress appetite, resulting in weight loss. In children this is associated with temporary slowing of the growth rate and perhaps a slight delay in pubertal development. They can also increase the heart rate and may cause a rise in blood pressure. Stimulants often cause insomnia.

These changes are largely reversible on stopping medication. However, there is concern the small rises in blood pressure could accelerate the rate of heart disease, so people who take medication over a number of years might have heart attacks or strokes slightly sooner than would have happened otherwise.

This does not mean older adults should not have their ADHD treated. Rather, they should be aware of the potential risks so they can make an informed decision. They should also make sure high blood pressure and attacks of chest pain are taken seriously.

Stimulants can be associated with stomach ache or headache. These effects may lessen over time or with a reduction in dose. While there have been reports about stimulants being misused by students, research on the risks of long-term prescription stimulant dependence is lacking.

Will medication be needed long term?

Although ADHD can affect a person’s functioning at all stages of their life, most people stop medication within the first two years.

People may stop taking it because they don’t like the way it makes them feel, or don’t like taking medication at all. Their short period on medication may have helped them develop a better understanding of themselves and how best to manage their ADHD.

In teenagers the medication may lose its effectiveness as they outgrow their dose and so they stop taking it. But this should be differentiated from tolerance, when the dose becomes less effective and there are only temporary improvements with dose increases.

Tolerance may be managed by taking short breaks from medication, switching from one stimulant to another or using a non-stimulant.

Too many prescriptions?

ADHD is becoming increasingly recognised, with more people – 2–5% of adults and 5–10% of children – being diagnosed. In Australia stimulants are highly regulated and mainly prescribed by specialists (paediatricians or psychiatrists), though this differs from state to state. As case loads grow for this lifelong diagnosis, there just aren’t enough specialists to fit everyone in.

In November, a Senate inquiry report into ADHD assessment and support services highlighted the desperation experienced by people seeking treatment.

There have already been changes to the legislation in New South Wales that may lead to more GPs being able to treat ADHD. Further training could help GPs feel more confident to manage ADHD. This could be in a shared-care arrangement or independent management of ADHD by GPs like a model being piloted at Nepean Blue Mountains Local Health District, with GPs training within an ADHD clinic (where I am a specialist clinician).

Not every person with ADHD will need or want to take medication. However, it should be more easily available for those who could find it helpful.

Alison Poulton, Senior Lecturer, Brain Mind Centre Nepean, University of Sydney

This article is republished from The Conversation under a Creative Commons license. Read the original article.