Research and rationing


Our ability to research pathogens and continually develop drugs or treatments that thwart them is likely to have changed the course of human life on Earth. Without medicines it’s probable our numbers would be severely curtailed through regular outbreaks of communicable diseases. Many of us may never have survived beyond childhood. In the mid 1800’s around 15% of infants died in their first year and many more before the age of five*. Our quest to cure illness and preserve life has, for many years, been founded on our ability to design and conduct well formulated scientific research. 

Roll forward about 180 years and we’re still conducting valuable research, advancing the discovery of new treatments or more effective drugs for the control of human illnesses, even if we remain unable to cure many of the ailments that afflict us. We appeal regularly and insistently to the public at large to help fund gargantuan efforts of scientific and humanitarian endeavour because resources are scarce and without them we might never find a cure.

As a scientist at heart, the importance of research isn’t lost on me. Neither is the dedication of the people who make it their life’s work to find a breakthrough that might just deliver the elusive cure. The process of research is a huge commitment; intense, time consuming and expensive. Resources involved run to millions of dollars yet recent articles suggest anywhere between 95 – 99% of Alzheimer’s and cancer research fails when tested in humans. It’s a high stakes situation for everyone, scientists, funding bodies, those newly diagnosed and those now desperate for new drugs because all else has failed them.

In the U.K. the situation becomes even more desperate when patients are prohibited from accessing new, proven drugs classified too expensive for NICE (the National Institute for Health and Care Excellence) to support. In reality this non-departmental public body ought to be called the National Institute for Health if it’s Cost Efficient because cost plays a major role when evaluating the provision of new, breakthrough drugs. The postcode lottery NICE was supposed to eradicate has been replaced by a national lottery where no-one wins when a new drug is deemed too expensive. At this juncture I’m left wondering whether any of the money I’ve donated to medical research over the last 25 years has achieved anything worthwhile. Continued rationing of life changing or prolonging drugs makes me suspect my small contribution may have been better invested in items to support those undergoing existing treatments. 

Just recently news of significant research grants includes the statement “hope this work could improve survival rates.” We all hold on to this hope but hope alone isn’t enough. Drugs evaluated as clinically effective are rejected by NICE if the price is too high.  Nivolumab is one example, there are many others. So if NICE continues preventing access to new treatments and patients can only receive older, cheaper drugs, what real term improvements can we expect to see?  Have we forgotten Articles 3 and 25 in the Universal Declaration of Human Rights and if so, should we continue donating to clinical research or would our donations be better spent providing respite or hospice care? Once upon a time I’d have argued medical research was money well spent, but as more and more of my friends get caught in the fight between NICE and the Pharmaceuticals my thoughts become increasingly conflicted.  When life is slipping away, it seems better care for the dying is more important.

*In Western societies 

Flowers, not thorns.

Sometimes the path through life makes us feel as if we’ve been dumped in a thicket of densely packed bramble bushes. The way out isn’t clearly visible and emerging into open space means running the gauntlet of a thousand thorns.  All those thorns leave us punctured, sore and bleeding.

I and countless others like me have run the gauntlet of a thousand thorns.  I had no choice in the matter and what happens next is still largely outside my own control. I’d hoped to see a garden full of flowers by now but the thorny brambles send spiky shoots in an attempt to pull me back into the thicket. This mornings attempt – potential refusal to do further risk-reducing surgery because “you can’t make next week so it will be classed as a cancellation and if you can’t make the next date offered then you won’t be given another.”

Hmm.

I’ve been asking about this surgery since January. I wanted it to happen in March. I followed it up in April when nothing happened only to be told I couldn’t have it in my preferred hospital because it’s no longer geared-up for someone like me. I’d suggest the downgrading of facilities in my local medical centre is not my fault. I was told I’d go on a waiting list for my non-preferred hospital where the consultant himself said they have a “major issue with beds.” I’d suggest the so-called super hospitals failure to cope with the volume of patients it now encounters is not my fault either.  I provided key dates for 6 months of the year on the basis that 6 months ought to be long enough to secure an appointment. Clearly it wasn’t; I’d suggest that too is not my fault.

Last year I cancelled holiday on NHS instruction only to find procedures were delayed by anywhere between 8 and 14 weeks. In the meantime I lost my deposit and had no holiday.  I didn’t sue for the costs I incurred or the failure to deliver services in a timely manner. I accepted the NHS is busy without assuming it was at fault.  Why then, when I am busy (and have been waiting for 6 months) do you assume it’s my fault since I can’t drop everything to attend a non-preferred hospital where I’ll be an in-patient instead of an out-patient for a procedure that’s fairly minimal in the grand scheme of things?

If I was religious I might be blaspheming a lot at this point.

The most ridiculous part of the thorny saga? This is risk-reducing surgery, the kind that saves the State money. I will become much more expensive and a much greater drain on NHS resources if the issues I’m trying to prevent subsequently materialise. That, dear NHS administrators and penny-pinching politicians and is called economics. It seems remarkable that I can ruin my health with alcohol, cigarettes, crystal meth or ketamine and receive copious amounts of NHS treatment as well as numerous State benefits for being sick and unemployable. Ask for risk-reducing surgery backed by medical opinion then fail to be available due to prior commitments including work, (i.e. making a positive contribution to the State) and that’s it. Blacklisted.

Although I might sound annoyed about the bureaucracy and lunacy within the system I have come to know this is just the way things are. I don’t believe it’s right and I feel sorry for anyone who runs this gauntlet thinking they must obey the powers that be at all costs. However, I’m not a time-waster or a benefits cheat. I know a refusal to provide preventative surgery under the guise it’s my fault since I’m now unavailable makes no sense at all.  I’d prefer to stay healthy and avoid being an unnecessary drain on the NHS but if you want to play hardball, so be it. Be in no doubt that there will be a scandal if I should become sick at some point in future when that eventuality was 90% preventable. The NHS like so many other British public services needs to take a flowers, not thorns approach. Instead of waving a big stick, making threats and taking punitive action, actively encourage people to do the right thing – take care of their health, hold down employment, gain a decent education and make a positive contribution to society overall.

There are flowers, not thorns in my garden. They’re there because I nurture them and tend them well. When they look prone to disease I treat them to prevent the illness spreading elsewhere or ruining my display. I encourage the flowers to grow by removing weeds that might otherwise overwhelm them. The practice of pruning a diseased leaf, choking weed or shrivelled bud is far more cost-effective and environmentally friendly than dousing every plant with toxic chemicals that may hold the blight at bay but never really cure it. Public services like the  NHS could learn a thing or two from people who have flowers in the garden.

Cardinal virtues, cancer and justice. It just is.

 

How often do we hear children say “that’s not fair!”  How many times have you asked why you or someone you consider a ‘good’ person was dealt the worst hand in this game called life?    The truth is…. life isn’t fair.  There’s little justice.  It just is.

Today’s reflection takes the cardinal virtue of justice – or it just is – as its theme. Buckle up, this could be interesting/thought-provoking/nonsense. Read and decide for yourselves.

Justice: Noun – just behaviour or treatment; the quality of being fair and reasonable.

Cancer doesn’t discriminate, it will happily strike the fittest, slimmest, most health conscious people if they’re genetically predisposed or exposed to certain environmental factors. The process of this disease is extremely complex.  Justice plays no part in cancer development, treatment or the long-term outlook. It just is and whichever hand we’re dealt, we have to make the best of it.  I could witter on about it forever; instead I’ll draw your attention to three points for contemplation – treatment, employment and family/friends.

Treatment:  We have a National Health Service in England. You might think it’s free; it isn’t. It’s partially funded by National Insurance contributions deducted from salaries at source. Most people also pay for prescription medicines, dental treatment, opticians and anything to do with hearing.  Cancer patients are exempt from prescription charges which seems fair and reasonable however we have to pay for dental work, sight and hearing aids in spite of the fact that some cancer treatments affect eyesight, damage hearing and teeth.

Another common misconception is that the NHS prescribes the most effective drugs, e.g. to manage side-effects. This is a fallacy.  The NHS prescribes on affordability; it often means cheap substitute drugs.  NHS administrators balancing the books assume this is OK because substitutes are designed to do broadly the same thing as their more effective (and expensive) counterparts.   However, cancer patients and medics will tell you substitute drugs don’t always work as well. They often cause unnecessary suffering and avoidable hospital admissions (that prove more costly than the more effective drugs), it’s more stressful for the patient and adds to the workload of our overstretched doctors and nurses.

Look at the words – unnecessary, avoidable, suffering, stressful and overstretched.  Now associate them with the justice – the quality of being fair and reasonable. It doesn’t make much sense does it?

In the US things are more confusing. I’d love £1 for every post I’ve read from someone fighting an insurer over the scans, medicines and follow-ups covered by their policy. The words fair and reasonable come to mind until I remember the mantra life isn’t fair.  I used to work in insurance; insurance companies want to make money, they don’t care that my US friends are fighting for their lives and need the best treatment to enable their survival (or provide a comfortable journey to the end of life).   Those without insurance are in an even more difficult situation; the most needy people treated in the poorest way by a civilised society.  Justice? No. It just is.

In low-resource countries the situation is desperate.  Fatality rates are highest in these countries because most have resource constraints that limit the capacity for detection, diagnosis and treatment.   In these countries women most commonly present with node positive locally advanced breast cancers; chemotherapy is required to treat them and often the underlying resources/infrastructure are absent.  When chemotherapy isn’t available these people only receive palliative care. Once again the poorest people are dealt the worst hand in the game. It doesn’t have to be this way; it just is.

Employment:  Scorchy over at The Sarcastic Boob wrote an excellent piece titled Professional Identity in Crisis.  Times have changed; for many women their careers are an integral part of their life so exclusion from the workplace for any reason (could be employer incompetence, failure to understand or appreciate what a person with cancer wants/needs during treatment, the effects of treatment itself or issues created by metastasis)  can have devastating consequences.  Continued social interaction during cancer treatment and the survival benefits of support networks at home, at work and in the community are well documented.  Eating healthily, avoiding processed foods and buying organic where possible is significantly more expensive than supermarket own brands.  Purchasing drugs that aren’t provided by the NHS or an insurer is very costly.  Work is important to the cancer patient for many reasons. Ultimately it’s important in a practical sense; cancer patients need money to live. Putting them on the bread-line or into the benefits system (where one exists) makes survival a thousand times more difficult.  Inducing stress by causing unnecessary worry is a proven route to metastasis!

Sadly too few employers understand cancer, too few seek to establish what the cancer patient wants to do and too few make adjustments that would enable the individual to balance work, treatment and the benefits that stable employment and sustained social contact can bring.   Too few employers think about the real issue a cancer patient is facing.

The real issue is life or death and I defy anyone facing the uncertainty of death to deny that compassion, just behaviour and treatment matters to them. It’s one of the only things that matter when everything else is sliding out of reach.

 Family and Friends:   Justice, family and friends is a conundrum.  Cancer is tough.  It’s tough on the patient but it’s equally tough on family and friends. They don’t have to go through treatment or side-effects but they share many of the same worries. Will the treatment work? Will the cancer come back? Will s/he die?   As with all traumatic life events some of us are better equipped for them others. It doesn’t mean some people are good while others are bad, we just have different approaches to difficult situations.

What many cancer patients need more than anything is a sense of certainty. Cancer throws everything up in the air and makes life very uncertain.  Family and friends are well-placed to generate certainty by remaining present, offering support, listening and providing a shoulder to cry on.    As the family or friend of a cancer patient, this can be difficult; fear isn’t reserved for the patient alone. Patients have no choice, they have to find a way around, over or through their fears.  Family and friends have more choices; they can choose to overcome their fears and be staunch supporters of the patient. Or they can be consumed by fear and chose to hide away.  I understand the second choice, fear and flight go hand-in-hand but I couldn’t do it myself.  I couldn’t abandon a family member or friend in need.  I understand some things look too hard, too painful and too frightening to endure and that might be true – but you don’t know for sure unless you try.

When family or friends decide it’s all too much, cancer patients have a variety of reactions. Sometimes they blame themselves for the impact they have on other people when dealing with a disease they didn’t ask for and have very little control over.  On occasion they may get angry and ask ‘how could s/he disappear at a time like this?’  Often they just get sad; the absence of dear ones who’ve been ever-present until cancer came a-calling is an emotional blow.

Fortunately I haven’t had this experience but many of my friends have and it’s hurt them deeply, far more deeply that the cancer itself.

Justice, treatment, employment, family and friends.  It’s not for me to tell other people how to behave but I pose a question – to health providers, insurers, administrators, employers, family members and friends….

Imagine you’ve been diagnosed with cancer.  Today, as you hear the words “you have cancer,” your whole world begins to fall apart.  Everything you thought you knew, all the plans you had, your hopes and dreams, they’ve all dissolved in front of your eyes.  You’ll feel this way tomorrow and the next day and the day after that.

It just is and you’re going to have to make the best of the hand you’ve been dealt.…. somehow.

So ask  yourself how you’ll assess justice, the quality of being fair and reasonable, when you can’t get the treatment/drugs you need, when your employer fails to understand the importance of your career or your need to work.  If that’s not enough, some of the people you hold so close to your heart just disappeared from your life in a flash.

Are you wondering what just happened to you? And what they hell you’re going to do about it?

Justice: a nice concept crying out for the practice of being fair and reasonable.

It just is.

 

Poker

Poker (Photo credit: maorix) Life isn’t fair so we have to play the hand we’re dealt.

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