Access by Various artists

31

Zika and microcephaly: things to know

by Hilary Stace

The Zika Virus seems to have come out of nowhere to be declared a World Health Organisation Public Health Emergency of International Concern on 1 February 2016, after a substantial spike in cases of microcephaly and Guillain-Barré syndrome were reported in Central and South America. Now it threatens our part of the world.

This is the same status the WHO gave to Polio a couple of years ago when eradication of that disease had stalled and cases were starting to pop up again.

Apart from causing Guillain–Barré which is a nasty, mostly temporary, paralysis not unlike Polio, the main effect of Zika Virus infection seems to be the risk of microcephaly to babies born to infected mothers. Microcephaly is the label given to those born with unusually small heads and consequent brain damage. Although many babies do not survive birth, some do and grow into healthy (although disabled) adults.

Several years ago on Public Address there was a discussion with PA reader Islander about children born with this impairment – she had heard from family members with experience in midwifery and nursing that microcephalic babies were often quietly left to die. (This is now known as ‘wild’ or unofficial euthanasia by some.) She consulted with her midwife sisters and subsequently clarified that it was  it was in fact anenocephalics who were "quietly left aside".

Joe Wylie added in the same discussion that there were several people with microcephaly at the Kimberley Centre when his parents worked there in the 1960s. But until this current Zika Virus outbreak it was considered a rare condition, even in the disability community. This might change.

A US mother of two girls with microcephaly has become an instant celebrity with her realistic and mainly positive story of parenting her family.

It is hard to know how this outbreak will play out. The mosquito apparently cannot survive at the moment in New Zealand but the virus is already here, and it is spreading through the Pacific. Tonga has just declared it an epidemic.

Under current New Zealand immigration regulations families with a microcephalic child would be denied permanent entry to New Zealand because of the potential for future costs against the state.

So the Zika Virus raises a whole lot of issues (in no particular order) that will need more attention in the months and years ahead.

•• Disability as tragedy

• • Support for disabled babies, children and their families, including immigrant families

••  Access to pre-natal screening and all the related ethical issues such as "then what"?

• • Access to late term abortion

••  "Wild" euthanasia

• • Vaccination – if one becomes available

••  Heavy use of pesticides particularly in poor, crowded, residential areas

• • Pregnancy, gender, and autonomy

• • Need for good, responsive, well-funded science

And probably much more.

62

The Blue Inhaler

by Hilary Stace

The Ventolin inhaler is a reason I am not dead.

Ventolin is a reliever medication for asthma delivered in a Metered Dose Inhaler or MDI, and globally it is one of the most commonly used treatments for any medical condition. I am not dependent on it as I used to be, as I now take a new generation MDI combining reliever and preventer asthma medications, but Ventolin is a useful backup. Asthma can be fatal and I personally know of several people who have died of attacks. Hence the ongoing international drive for more effective medications.

What is asthma? It can be a wheezy or shallow fast breath though constricted airways in the lungs. The tubes have reacted to some trigger by tightening and producing mucus, leaving less room for the passage of air.

The causes of asthma are numerous and person-specific, from allergens to a change in atmospheric pressure. It can become a battle to breathe, with the out-breath often harder to perform than the in-breath. The whole body can be hunched over concentrating on the effort to get the lungs and their extensive network of tiny inflamed tubes to inflate and deflate and send that essential life force of oxygen around the body to the organs, particularly the heart and brain. Some people experience this bronchospasm as if painful metal bands are encircling the lungs. A puff or two of Ventolin can ease that crisis, even if temporarily, by soothing and relaxing the breathing muscles.

The Ventolin inhaler package consists of a metal canister, a metering valve, a mouthpiece and cap. Some people, particularly children, who find it difficult to manage a synchronised puff/in-breath, use a bulbous plastic spacer to take in the metered formulation. Ventolin contains a chemical formulation called salbutamol (in most of the world) or albuterol (in the US) which is used to relieve the bronchospasm which is the indicator of the asthma attack. When the canister is pressed into the valve, the drug is propelled by liquefied gas into the airways of the lungs which are then forced open.

The Ventolin inhaler went on the international market in 1969, but, as with most inventions, was built on existing technology. It was probably a joint effort by a team, whereby young poorly-paid technicians did much of the work. Hopefully it went through ethically robust research trials, but I suspect there were some animals and suffering in there too.

Before Ventolin, I used an earlier-version MDI which wasn’t as effective and required more inhalations, which caused heart palpitations. My teenage friends also liked to try it to experience the effect of a pounding heart.

Wikipedia names various men who developed the idea of inhalation for lung conditions. One English doctor developed an inhalation jug in the 1770s, which, a hundred years later, had evolved into a ceramic pot inhaler. French inventors developed atomisers or nebulisers from mechanisms used to dispense perfume. My first inhaler, a 1955 invention, drew from these traditions with the addition of pressure. Although the names of men are attributed to the inventions I suspect they had wives or assistants who knew how to calm wheezy children, and who provided practical input.

The tricky bit was inventing a device which was sufficiently calibrated to deliver an accurate dose for asthmatics of any age anywhere in the world. Adding the propellant chlorofluorocarbon (CFC) to the pressurised canister was the secret. Two decades after Ventolin’s invention an unexpected negative consequence of that gas ‒ atmospheric ozone depletion ‒ made buyers and prescribers wary.

New devices powered by breath alone were produced, but they were not as efficient. In New Zealand, Pharmac funded a generic without CFC but many chose to pay extra for the Ventolin, while the less effective device led to accusations of inequity for poorer asthmatics. Eventually Ventolin developed a CFC free propellant (HFA134a, also known as norflurane) on which Pharmac still imposes a part-charge. Blue inhalers including generics (cheaper versions made in other countries) are all commonly called Ventolin, although official brand names vary.

I have a friend whose son was a participant in the trial for a CFC alternative in the 1990s, illustrating the internationality of Ventolin.

Another New Zealand link to Ventolin involves its parent company: GlaxoSmithKline. Early last century Joseph Nathan’s dairy company in Bunnythorpe in the Manawatu developed a fortified milk powder for babies which he called Defiance. Truby King, that notable eugenicist and the founder of Plunket, promoted the powder for "building bonny babies".

But Nathan’s international business colleagues were wary of feeding babies ‘defiance’ so renamed it Glaxo. GlaxoSmithKline is now the second biggest international drug company. GSK is not just known for Ventolin – in 1963 they also invented Betnovate, a commonly used ointment for eczema. That is another story.

Most posts on this Access blog have tended to concentrate on the social model of disability whereby disability can be considered as a social, economic and political construction which creates barriers to full participation in society for people with impairments. But this post shows that there is also a place for technology, and it can even keep you alive.

43

Treatment for itching and shyness

by Hilary Stace

I was born with skin which was often too tight, too brittle, too burning and too itchy. My mother spent a great deal of time trying to alleviate the effects of my eczema including regular bedtime rituals of which I have vivid sensory memories, even though I was still a preschooler.

Before bed my limbs, body and face were smeared with viscous black coal tar ointment that smelt like freshly laid asphalt. (I could never understand why my father’s coal tar soap was orange and smelled nicer). My mother then wrapped me in yards of damp bandage. Lastly she tied cotton mitts on my hands with ribbons.

Then she would get a large bottle with a sugar-encrusted rim from the cupboard. The metallic spoon taste mingled with the sickly but bitter Phenergan syrup. Two special bedtime companions were my soft toys Flopsy Mopsy (a rabbit of course) and Kittie. Their original colours were indiscernible under their patina of grease from the oozing coal tar.

Whether from the medical conditions or otherwise, I was a chronically shy child and my mother struggled to disentangle my fingers from her skirt when leaving me at Playcentre or with friends. So beside the bottle of Phenergan was another brown glass container which contained large green tablets. They were braveness pills and the longer you sucked them the braver you got.

So what was the science behind these treatments? Coal tar is a liquid by product from the process of turning coal into a product called coke which was used in the steel industry. Its skin-soothing properties have been known and widely used for at least 150 years, despite its strong smell and reputation for staining. It was standard emollient treatment for eczema when I was young in the days before steroids were mainstream. There still seems to be uncertainty about why it works including a theory that it limits DNA reproduction. The grease is smeared on skin damp from the water of a bath or shower and helps keeps that moisture in. Wet bandages prolong the effect.

My father’s coal tar was made from the same product but was sold for its antiseptic properties and somehow the smell and colour were altered to be much more pleasant. That soap is still produced, although no longer allowed without prescription in many countries as coal tar has been implicated in skin cancer. (I have had a melanoma removed and never linked it to those years of coal tar; my father used the soap for 84 years with no ill effect). The soap is now produced in Turkey with tea tree oil as its vital ingredient.

Phenergan (Promethazine hydrochloride) was developed over 60 years ago as an antihistamine for those with allergies, rashes, hives, nausea and motion sickness. Histamine is produced by the body as a reaction to person-specific allergens ‒ foreign substances which the body encounters by inhalation, ingesting or through the skin ‒ and antihistamines help reduce the histamine allergic reaction. Phenergan’s main side effect is drowsiness, which suited my mother. The medicine has a variety of names these days and is administered as syrup or tablet. It is now not recommended for children under two, nor be used for no longer than ten days in a row. The dose for children is five mls with a maximum of fifteen mls in 24 hours. I remember my dose as at least one large spoon, sometimes two. But my mother is no longer around to ask.

My mother was astute with her use of braveness pills and their placebo effect. She found large pleasant tasting sweets (not identifiable as such by me), with a hint of sherbet and peppermint and which required a lot of sucking, enhancing and prolonging the placebo aspect. They worked well and I have used them successfully with my own children.

As a shy, eczematic child, I was fortunate to have a mother who was both patient and innovative.

21

Is New Zealand Fair and Square?

by Tom Adson

We, parents in their declining years, have a family member who is a 40 year-old male with disability. A couple of weeks ago, he screwed up his courage to the sticking point – in order to overcome the barrier of extreme anxiety – and accepted the offer of work, in an effort to improve his own wellbeing and  to contribute to the community as a whole.

The work was to deliver circulars and free local papers. A three-day slot was provided for the deliveries to be completed. It was understood that the payment would be $30, so about two hours work was expected when applying the minimum hourly rate.

The following day the papers arrived, later than agreed, so this put pressure on the timeframe. There were 10 different circulars running adverts for the well-known big companies. The weight of the papers was about 70kg (measured by using bathroom scales). They were promptly sorted by the family member and delivered in two trips on foot out of his own back pack.

The following morning, another batch of papers, part of the same job but still to be delivered, was found on the doorstep. They were the Hutt News and the Regional News, weighing around 50kgs. This time the delivery required two adults and the family car had to be used because of practicalities and the bulk of the papers involved – the alternative was multiple trips on foot involving extended time. The large backpack just did not have the necessary capacity.

More than 250 addresses were delivered to. The total time committed to the work was 10.47 hours and the expense for the car at IRD rates of 74 cents/km totalled $5. This makes the true cost of the work to be about $190.00 at the minimum hourly rate of $14.75.

The work experience served to accentuate extreme anxiety for the disabled person and it was necessary to advise the other party to the contract that further service could not be provided.

If $30 is the final sum that is paid (my understanding is that payment is still awaited but that it is likely to be $20 now, not $30), the actual hourly rate based on $30 will equate to under $3/hr for a 40 year old man who has contributed strenuous manual labor. Does this make sense, and is it right and just?

It seems to me that the ‘free economy’ has almost achieved its goal; that is competition has run its course to the point where human rights in Gods Own (NZ) are being contravened. This is because some of its citizens are now doing strenuous manual labour for almost nothing. If payment for the work is not made it will be less than nothing – at least $5.00 for the use of the family car and backpack has been expended. My guess is that this is not an isolated case.

I have just been watching a TV documentary about the “Death Railway” of Burma (1942/43), where men were worked, whipped and starved to death in order to support the economy. Is NZ unwittingly and blithely going down the same track? It looks as though it might be. After all I thought I heard the Chief Economist at the BNZ saying today that the NZ economy is doing well ..."lots of ticks on the right side of the ledger". What about the left side, where we might find the hearts and minds of the people that are the neediest?

152

How many agencies does it take to change a light bulb?

by Angela Hart

Halfway through October, my family had the experience of a planned power outage and it led me to wonder what people generally think the provisions are in New Zealand for medically dependent people, and if my expectations are unreasonable.

What happened was a simple planned power outage set for 11:30pm to 4:30 am on a week night, to do essential network maintenance and timed to cause minimal disturbance for most people in our neighbourhood.

We were initially informed by our electricity retailer, Powershop, in an email which said those requiring electricity for medical purposes should phone them to discuss their options. I did that, and was told that there were no options; it was out of their hands, nothing they could do, it wasn’t them it was United Networks, their supplier.

Next we got a letter in the post. Two identical ones actually, in separate envelopes. This was from Vector (who own United Networks) to tell us about the outage. The letter said to contact our health provider in case of reliance on electrically operated medical equipment.

I have a family member who needs a Bipap machine to breathe whenever she lies down. Back in the day there’d have been a tracheotomy and a ventilator. These days, with the advent of BiPap, respiratory conditions can often be managed in a less traumatic and invasive way, and life goes on without any great fuss. She isn’t medically dependent to the degree that she’d die in minutes if the BiPap machine stopped working, like this person, but there would be serious medical consequences.

So I contacted the respiratory department of the hospital responsible for our machine, explained about the planned power outage and asked if they could supply a battery for the machine. No was the answer, but you can come in to hospital for the night.

For many reasons, the thought of another night in hospital was singularly unappealing, so I continued to explore our options, from spending the night in a motel or staying up through the power cut, to hiring a generator.

I phoned two of the agencies involved in supporting us by channelling Ministry of Health funding. Manawanui in Charge, our Individualised Funding Host, told me that Vector wasn’t allowed to cut our power off (both untrue and unhelpful). Taikura Trust, our Needs Assessment and Support Co-ordination agency said the same thing and went so far as to phone Vector on our behalf. I was surprised by the stance taken by these two support agencies.

Subsequent discussions with a representative of Vector ended with an emphatic “this is not our responsibility, if there is medical dependency, responsibility lies with the medical people, we’ve given you advanced notice so that you can sort something out with them”.

From Vector’s perspective, planned outages are a fact of life, you can’t do some of the essential maintenance on live equipment, and there is no guarantee of supply. Perhaps there should be (except for unforeseeable events).  Maybe the power companies should be made responsible. I don’t know.

Phone calls continued.  I was repeatedly treated like an idiot, asked if I’d rung the power company, and surely I must have friends or family who could put us up for the night (friends and family with spare beds and wheelchair-accessible homes?).  I was told to go and see our GP (at whose expense? And what could he possibly do?).

I rang a hire company and checked out the cost of hiring an inverter generator that could run this expensive medical equipment safely. $104 - surely a lot cheaper than a night in hospital and considerably less difficult for us. I should explain that a night spent anywhere but at home involves packing, unpacking and setting up  an array of essential equipment, (twice, once there and once back home) on top of the stress and fatigue of the journey and the experience. It isn’t just throw a few clothes in a bag and go.

I contacted the Ministry for Social Development. They said they might be able to lend us money to cover the hire cost – if we could provide written proof that no one else would help – but it would have to be paid back.

I booked the inverter generator and sent a couple more emails, one of them to a CCS Disability Action policy co-ordinator. He offered to look into the issue when he had time but suggested I contact my MP. Why hadn’t I thought of that?

Well, my previous MP was Paula Bennett. My dealings with her office were unproductive. It just hadn’t occurred to me that my MP might be willing and able to help. I thought why not, can’t hurt, and sent a quick email to Phil Twyford, the incumbent for Te Atatu. Blow me down, he responded within a couple of hours and was on to it.

He spoke with management at my local DHB, they contacted me and agreed to reimburse me for the hire cost and to work with me to produce a clear plan for future outages. I haven’t yet been reimbursed or been involved in any planning with the DHB, but we all know how slowly the wheels do turn.

It was a good outcome for us, because $104 is a significant proportion of the weekly Supported Living Payment that my family member lives on, and I don’t think it is fair to expect a person on this level of income to have to pay this sort of cost for this sort of thing.   This planned power outage gave us yet another disability-related cost for which there is no provision, this time an urgent one.

It seems to me that better plans need to be in place and communicated to people. Not all medically dependent people will have to have continual electricity. People using oxygen concentrators, for example, can be supplied temporarily with small portable oxygen cylinders. But the back-up plan for medically dependent people needs to be workable, clear and known to all parties. And I don’t think taking up a hospital bed when there’s a simpler and cheaper option is sensible. What do you think?