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Case
History: Peter Allen
Peter
Allen is now 51 years old, but classic symptoms
of androgen deficiency: began to develop in
his early 40’s - namely fatigue, mental
cloudiness with gradual loss of ability to concentrate,
irritability and reduced capacity for coping
with any stress or pressure, as well as loss
of sex drive.
He
has 2 high risk indicators in his past that
could account for the onset of symptoms - a
vasectomy and exposure to both farming and cleaning
chemicals. He is an asthmatic and was also on
medication for a hiatus hernia (oesophagitus).
As
the symptoms worsened, he was unable to keep
up with his duties as a Caravan Park Manager
and eventually lost his job.
He
continued to deteriorate until September 1998
when he and his doctor, with assistance and
guidance of STAG (now TIME FOR MEN) began to
explore Hormone supplementation (HRT) for him
according to international guidelines, with
a degree of success.
In
May 1999 Peter had 6 x 200 slow release testosterone
pellets implanted into his buttock, again according
to the international protocols made available
through TIME FOR MEN. The benefits of such an
implant usually lasts from 4-6 months.
At
that time he qualified for subsidy under the
Pharmaceutical Benefits Scheme having been diagnosed
as ‘hypogonadal’ by his doctor. This
was what was needed to qualify prior to the
August 1199 changes. Because he had a Health
Care Card the prescription cost him just $3.20.
Without a card his cost on subsidy would have
been $20.60
He
rapidly began to recover his health. His sense
of well being returned. He was again able to
do things around the house and to assume responsibility
as a Full Time Carer for his wife, who is on
a Disability Support Pension. There was a gradual
return of sexual function. His asthma cleared
up. He no longer needed to take medication for
his cesophagitus and there was an overall dramatic
improvement in physical, emotional and mental
wellbeing and functioning.
His
wife comments that he became an affectionate
partner again - not just sexually but also in
giving her a spontaneous hug which she had missed.
With the onset of his symptoms he had become
withdrawn from her and antisocialgenerally.
There was a Jack of desire and lack of any affection
or physical contact, so that she felt emotionally
deprived and was constantly worrying at what
was happening to him. She had watched him deteriorating
in his job and how he had struggled to keep
going when he was not up to par to handle it.
It was a very lonely time for her. She was also
very concerned about safety as he would often
lose concentration whilst driving.
After
the testosterone implants she says he was improved
in all ways, which was a tremendous relief for
her
The
couple live in a modest old weatherboard cottage
in Bowraville, which they are buying at a fortnightly
mortgage payment of $216. Their total income
at that time was just $608.60 a fortnight.
Peter
was therefore concerned to hear about the proposed
change of rules regarding subsidy. If he couldn’t
meet the new punitive criteria he would have
to pay between $400— $450 for the pellets
next time, a sum totally out of his reach.
When
the rules came in and he did not qualify, his
doctor Dr Andrew Heslop, wrote to the PBAC pointing
out that Peter had previously been on the treatment,
that he had had an excellent clinical response
and requesting that he be allowed to continue
on Authority forPBS subsidy. This was declined.
As
the effect of the implanted pellets wore off,
all Peters old symptoms returned but at a much
faster rate than originally. His descent from
wellbeing to debility, which had originally
occurred gradually over years of decline, took
just 3-4 months to re-appear.
Information
gathered under P01 reveals that the PBAC knew
that anyone already qualified and on treatment
under the previous criteria and who then had
treatment withdrawn would suffer this distressing
crash. They nevertheless inhumanely decided
against a grandfather clause that would have
allowed those already legitimately diagnosed
to continue with subsidised treatment.
Peter
describes the crash as a "living nightmare".
He describes waking up feeling terrible, legs
cramped up, anxiety attacks and severe depression,
severe skin problems with dry cracking skin
and eczema as well as the return of all his
previous debilitating symptoms and return of
other the health problems that had cleared up
whilst. he was on supplementation.
Peter
himself petitioned everyone he could from the
Minister, the Department of Health and Aged
Care, the PSAC, his own MP, the other political
parties and the Endocrine Society. He also began
to search the Internet and discovered in his
own words that "the world is awash with
scientific papers to support the use of testosterone
supplementation when supported by clinical examination
and pathology with reference to the Free Androgen
Index1’. (Neither clinical observation
nor PAl is taken into account under the Australian
government changes)
In
WA we know of at least one man who was given
an authority for PBS subsidised prescription
after his doctor wrote to the PBAC, even though
he did not meet the new qualifying criteria.
It
had also been discovered that the results provided
to doctors were in any case only approximate
- with a recognised error margin of 2.5 nmols
(ie an error factor of over 25% against the
required level of 8nmols) within a single laboratory
and a variance of up to 5 nmols between different
laboratories.
In
view of both the above, Peters doctor therefore
wrote to the PBAC a second time but was again
refused.
Key
Points of Case Study
In
refusing to take into account the 2.5 umols
per litre margin of error inherent in the testing
process , the government has denied Mr Allen
access to natural justice in that he has been
refused medication he needs to function normally
in life - not on the basis of his medical status
but on a pure random chance factor.
We
have evidence that in at least one other case
the rules have been waived to allow a man to
receive the subsidy on the request of his doctor
notwithstanding the fact that he did not meet
the rigid criteria. He was further outside than
Mr Allen
Mr
Allen has therefore received less than equitable
treatment.
Information
gained under FOI has revealed that the process
for setting the criteria imposed upon Mr Allen
was flawed. Even though the criteria was later
endorsed by a paper from the Endocrine Society
no supporting scientific data was provided in
that paper to justify opinion agreeing with
the government’s criteria content and level.
Since
this opinion is at odds with international expert
opinion and there are other factors which indicate
that undue influence could have been brought
to bear in this case, an independent review
is warranted. This is particularly so when the
government has chosen to totally exclude the
opinion of each man’s treating doctor.
The
hearing on 15 February 2001 determined that
the MT does not have jurisdiction but indicated
that a review should be sought under ADJR.
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