Slow progression

Thursday 26 September 2019

I saw The Professor last week for my six-monthly check up. It turned out Rachel, who has been researching my case, was on holiday so I had the privilege of catching up with the main man again.

He was in a good mood.  Upbeat and welcoming, presumably he had been on an enjoyable summer break himself.  

“You look well,” he started. “How have you been?”

“Well I might look well but I don’t feel great. I have a couple of new symptoms since last saw you. Orthostatic hypotension: I felt like I was pretty close to fainting in the office a few times. And problems with my speech. I trip over my tongue sometimes and occasionally even lose my voice. But the biggest problem continues to be fatigue. I have very disturbed sleep most nights meaning I’m tired much of the time. I have no problem getting to sleep. Staying asleep is the problem. Though I think sleep problems are par for the course with Parkinson’s.”

I was on a roll and decided to continue my brain dump so that he had the full picture.

“But I must say the Madopar is very effective. I like the flexibility of being able to take the tablets when I need them. On balance, I don’t think there’s any need to change my prescription.”

He did his routine movement tests and then we discussed each of my new symptoms in turn. 

The orthostatic hypotension - low blood pressure causing fainting - is often associated with the hot weather and dehydration, he told me. This seemed on the money... I had experienced several bouts during the summer hot spell, but nothing recently.

He told me my speech sounded fine, though suggested a visit to a speech therapist nevertheless. I fumbled my words a little (perhaps accidentally on purpose) as I acknowledged the idea.

And as for the sleep disturbances, as I suspected, he could offer no remedy. As I told him, the fatigue is part of the package and there’s nothing much anyone can do about it.

My condition had undoubtedly developed since my last appointment, but only slightly. Thankfully my progression is slow. He concurred with my view of leaving my medication unchanged for another six months.

Medical research is painfully slow too.

There was no further news on my genetic analysis, only confirmation that it was in progress, along with a vague prediction that targeted drug treatments are just a few years away. Much as his words were well intentioned and no doubt well informed, I can’t help feeling that the identification of a genetic factor in my family history of Parkinson’s is still a way off.

As for the holy grail of a cure, that feels to me a bit like the promise of nuclear fusion (the process that powers the sun, as opposed to nuclear fission which Is very different). Back in the fifties, nuclear fusion was about thirty years away from solving the world’s energy problems once and for all. Sixty years and billions of research dollars later, it’s still a promising technology - and still about thirty years away from being a reality.

So the theme of the day was slow progression: slow progression of my condition, slow progression of my genetic analysis, and slow progression of the search for a cure.

On the last point, I related to The Professor my ideas following my visit to Kyoto. That, once I retire in a few years’ time, I could offer my data analysis experience to research on a voluntary basis.

“That’s very interesting,” he mused. “A lot of our research involves bioinformatics. Crunching through large volumes of data. And something we find is that it’s hard to retain good people. They all get lured into jobs in The City or with software start ups.”

“You wouldn’t have that problem with me. I’d work for free for say three days a week. I would just need any expenses to be covered.  I might also need to be restricted access to some data like my own results. Anyway, I just wanted to sow the seed in case you had any bright ideas about how I could be useful.”

Later that day I sent him my CV. He acknowledged receipt with a thank you and a request to talk again when the time is right.

I don’t know if I can really be helpful in the search for better treatments. But I’d like to try. And perhaps the most useful thing I can contribute is the one thing that was lacking in my visit today. 

A sense of urgency.


The economics of Parkinson's

Thursday 5 September 2019

How much does Parkinson’s cost?

The Michael J Fox foundation recently published a study claiming that in the US the cost is $52 billion per year. That sounds like a big number but what does it actually mean?

Well, there are two types of cost: direct costs and indirect costs.

Direct costs are the money that is actually spent on Parkinson’s including hospitalisation, medical appointments and medication. According to the study, this part is $25.4 billion per year or an average of about $25,000 for each of the million or so PD sufferers in the US.

Let’s sanity check this figure. I pay £18 in prescription charges for my medication about six times per year. But the actual cost of that medication, for which the National Health Service foots the bill, I reckon is more like £250 a time or £1,500 per year. And, in the future, this figure will only go up as my prescription increases. In addition, I probably have an average of three medical appointments per year at a total cost of £1,000 or so, giving a total cost to the taxpayer of £2,500 per year.

Not so bad?

Not so bad right now, but in my later years I may need full time care. That typically costs something like £60,000 per year. If I assume I live 20 years with Parkinson’s and need significant care for the last 5 of those then we arrive at an average figure of £ 17,500 per year. This is pretty much in line with the Michael J Fox estimate, especially bearing in mind that healthcare in the US is more expensive than the UK.

The indirect costs are harder to estimate. These are things like lost income through time off work, early retirement and the cost of family members giving up their income to act as carers. The Michael J Fox study gives a figure of $26.5 billion for this or again roughly $25,000 for each PwP in the US.

Of course, loss of income is highly variable. If, like most people, you get diagnosed over the age of 65 then you are probably already retired anyway. In my own case I will most likely retire 4-5 years earlier than I would otherwise have done and because I am a relatively high earner the impact is significant. For each year that I could have been earning the taxman is losing tens of thousands of pounds and I am losing a lot more. In fact, both the taxman and I are already losing out because I currently work a 4½ day week due to the Parkinson’s fatigue.

Other factors, like the lost income of a spouse who chooses to go part-time to spend the rest of their time caring, are harder to estimate. And then there are other considerations like the fact that I have reduced life expectancy. Parkinson’s won’t directly kill me, but it will increase the risk of me choking, or put more pressure on my heart. My early death might in turn actually reduce the burden I place on the welfare state.

So the indirect costs are highly variable but the Michael J Fox number, as an average, seems reasonable.

In summary Parkinson’s costs about $50,000 or roughly £40,000 per person per year. These numbers don’t sound too bad until you multiply by the number of PwPs.

In the UK, that comes to around £5 billion a year. That’s enough to build perhaps 25 new hospitals.

However...

Thinking about it another way, if we cured all the diseases, we wouldn’t need so many hospitals or doctors, or nurses anyway. Or the medicines. Or specialist carers. Or the medical equipment. Or PhD students searching for answers. Or medical conferences that bring people together from across the globe.

Taking a broader view, a condition like Parkinson’s arguably stimulates economic activity that offsets much of what it takes from the public purse. These sorts of big dollar headlines need to be read with a sceptical eye.

So perhaps the most important financial impact is a personal one. I will be retiring early and maybe spending a chunk of my pension savings on care in later life, leaving me a lot less to live on. This is not such a big deal for me, given that I probably want to spend my twilight years watching endless boxsets and documentaries on Netflix rather than travelling around the world or driving a Jag. But, unfortunately, it does affect those closest to me.



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