Theft, lies and medical breakthroughs

peter-pringleThis interview was originally published in COSMOS Magazine, issue 49.

British-born Peter Pringle spent 30 years as a foreign correspondent, writing for magazines and newspapers such as The New York TimesThe Observer and The Atlantic. Now based in New York City, he has authored or co-authored eight books, most recently a story of a famous scientific rip-off that followed the discovery of a cure for tuberculosis. He chats to COSMOS reviews editor Rivqa Rafael about the controversy. Continue reading

Organ donation: it’s for everyone

Yesterday, I had an article published at Galus Australis, which is a great website that features articles about Jewish life in Australia. I wrote about organ donation, as there are particular issues for Orthodox Jews when considering signing up as a potential donor.

For those less interested in the intricacies of Jewish jurisprudence, I’d like to present the Australian spin to the issue. This is a cheat of a post, because I’m going to pull some of the Galus Australis article into it, but I will add some further detail to assuage my guilt.

The good news for Australians is that we have a high rate of successful transplants. The bad news is that rates of organ donation in Australia are embarrassingly low for a developed country. According to the Organ and Tissue Authority’s website, around 1700 Australians are on a transplant list; last year, only half the organs needed were donated. (Fewer donors are needed than there are recipients, as one donor can save up to 10 lives, as well as providing non-essential [but life-changing] tissue, such as corneas to cure blindness.)

Fewer than one in five Australians have discussed their wishes regarding donation with their families. This is why donation rates are so low: people don’t know their loved one’s wishes and err on the side of refusal.

The Authority has a campaign running to encourage people to discuss their wishes regarding donation with their families. In many ways, this is more important than actually registering as a donor, as it’s the family, not the individual, that makes the ultimate decision. The message is pretty clear: register as an organ donor and talk about it with your family.

It can be uncomfortable to make plans about your body after death, and of course it’s highly unlikely that you will become an organ donor. But that’s precisely why it’s so important to have more potential organ donors willing and registered. It can also be helpful to consider registering for bone marrow donation and donating blood regularly; in the context of these living donations, the focus is taken off donation after death.

Together, these actions might save a life – or several – one day.

A simpler system. (Please?)

Health care in Australia is actually pretty good, compared to, say, Ethiopia. Still, there’s plenty of room for improvement. So I was interested in what would happen on 19 April, when COAG (the Council of Australian Governments) met to thrash out Rudd’s proposition to take over health care (currently divided between federal and state governments, the latter of which I personally believe should be abolished altogether).

I didn’t get my act together to comment on the results of the meeting earlier because I was busy with the aftermath of a hospital experience of my own — the birth of my second child. (I’ll get to birth politics in another post.) Since then, the Budget has yielded more health-related reforms to debate at dinner parties, but the agreement in April still holds my interest, and here’s why.

I’m generally a healthy person, so apart from a visit to emergency after spraining an ankle on a weekend, my main experience with the hospital system has been for natal (pre, peri and post) care. This was a fairly straightforward experience with my first child, at least in terms of continuity of care. With my second, however, things got a little complicated.

In retrospect, I didn’t help matters by choosing the “shared care” option of care. This meant that instead of taking the option of seeing the same midwife the whole pregnancy, I had most of my appointments with my general practitioner. This was more convenient for me and I like her, so it worked well until I was about 30 weeks’ pregnant and diagnosed with gestational diabetes. The midwife who broke the news to me slagged off my GP for not calling me to let me know (when actually she’d ordered the test so long before, I’d hardly expect her to be holding her breath for my borderline results).

And it all went downhill from there. I got a referral to an endocrinologist and a diabetes educator. I had to see an obstetrician to clear me to go back to shared care, and was transferred to a different obstetric team for that appointment, so that the appointment could be on the same day as the endocrinologist appointment.

Initially these changes, like the dietary changes and finger prick blood tests, were more of an inconvenience than anything else. But at 38 weeks, with work deadlines competing with my due date, I decided to skip my last endocrinologist appointment. I was meant to make a midwife appointment while I was there, but I figured I could see the GP instead. She was happy to give me a check-up but said that I really should be having my appointments at the hospital at that stage.

But we were both puzzled about who I should be seeing. The obstetricians had cleared me to go back to the GP but I’d been taken off my previous team, so I had no midwife to look after me. She called the shared care liaison officer and got a voicemail message. In desperation I tried to contact the diabetes educator and finally got lucky — another midwife, Fiona, answered the phone and squeezed me into her schedule. I made it to one appointment with her before my son was born.

The point of this story is that health care in this country is too complex, even for someone who’s fairly health literate. Communication between health professionals is poor. Outside of set appointment times, patients’ access to health professionals is pretty much non-existent. Fiona mentioned that the hospital was moving away from group midwifery (where women have one midwife looking after them for pregnancy and birth, which is obviously excellent) and more towards shared care — because the hospital was broke.

If this goes ahead, it will leave more women bewildered about where they fit in the system. When I worked as a medical receptionist, patients would often call to request a home visit when they really needed to have called an ambulance five minutes previously. Patients hold up GPs and even orthopaedic surgeons with their life stories, often (I think) because they genuinely don’t know who they really should turn to.

So when a government meeting promises to “[help] patients receive more seamless care across sectors of the health system”, all I can say is YES PLEASE. Whatever other criticisms can be levelled at Rudd and the current government, if they can actually achieve simplicity in health care, I’ll be impressed.

No right answer

“Good and ill have not changed since yesteryear,” says Aragorn in Lord of the Rings, but to me the goalposts must have shifted somewhere along the way. In my lifetime, mainstream opinions about euthanasia, and abortion (to name two important examples) have changed drastically.

The article linked above describes the extreme measures that parents of a Ashley, a girl with serious brain damage, have taken to change their daughter’s life. They have had her sterilised, so that she can’t become pregnant if raped; removed her breast buds, so that she won’t have the added discomfort of breasts; and given her growth hormones so that she will remain smaller and thus easier to transfer and care for.

They argue on their blog that they have done this to make her more comfortable and not for their own benefit; certainly they seem to be trying to provide her with the best environment possible. And of course, within reason, making things easier for oneself as a parent does make things better for the child.

In the Time article, the doctors looking after Ashley discuss their approach to this unusual case as doctors. Here’s a quote that I think goes to the heart of the matter:

“I felt we were doing the right thing for this little girl—but that didn’t keep me from feeling a bit of unease,” admits Diekema. “And that’s as it should be. Humility is important in a case like this.”

There’s no rule book for situations like this. And sometimes there just isn’t a right answer. All you can do is weigh it up and make what seems to be the best decision. I don’t know if Ashley’s doctors did the right thing or not. Even they don’t really know. In a sense, that’s what medical ethics is about.

Private universe

There’s been a fair bit in the news about autism recently.

I’ve always been fascinated by this disorder. The MMR vaccine scandal has been interesting to follow as an example of below-par science, and poor understanding by the public of the science. To me, this is just a symptom that science education and mainstream media science reporting needs some vast improvement.

But the main reason is probably that I know so many people on the spectrum. I grew up knowing a family in which all the boys had quite severe autism and have since met others with autism or Asperger syndrome. I always wondered: What sort of place could these boys have in a world where communication is vital? When you “have a different sort of internal thought” that in some cases leaves you completely dependent on your family or other carers for your entire life — what does it mean? What does it tell us about the human brain? Is it really a disorder, or just another state of being?

From that last article:

With autism diagnoses rising steadily, talk of an “epidemic” and a growing search for a cure, Roy feels threatened. “I feel stabbed when it comes to ‘curing’ or ‘treating’ autism,” he says. “It’s like society doesn’t need us.”

Many autistic people are starting to agree. They have had enough of being treated as a medical problem, arguing that autism is not a disease that needs to be cured but just a normal part of human diversity. This emerging “autistic rights” movement hopes to launch an international campaign akin to Gay Pride, encouraging autistic people everywhere to embrace their “neurodiversity”, and persuading wider society to accept them as they are…

Carina Schmidt’s son has autistic disorder and requires round-the-clock attention. His condition is so severe that he required a 10-month stay at the Kennedy Krieger Institute to break some of his self-harming habits. She is adamant about doing everything possible to help her son, who now lives in a group home in Rockville, Maryland. She also supports the development of prenatal tests for autism. “If my son could be cured today I would say ‘yes’,” she says. “My family has suffered like there is no tomorrow – that’s why we choose to have no more kids.” … Schmidt says that she will continue seeking help for her son. And she is sure he wants her to. “I can see my son wants to be normal,” she says.

There are no easy answers here. But I think the research being done now is fascinating and exciting. Even if people with autism don’t want a cure, this research goes to the heart of what makes us human: our complex, intricate, amazing brains.