I had been
following the news of a single mother trying to send her 17 y/o daughter who
had MLD(Metachromatic Leukodystrophy) overseas for treatment. The mother had
tried to raise fund for her daughter to seek treatment overseas. She had
written a book and run several campaign to raise fund for her daughter and 3
other MLD patients. The govt. had however probed into her campaign and declared
that the campaign was illegal. The reason was the govt. prohibit single
targeted fund raising event; fund raising should be targeted to a group of
people rather then one persons.
The mother had
taken the child to china recently and consultation was done by America, China,
Taiwan expert and decided to undergo a treatment module in phase I/II clinical
trial hosted by a Italian Institute…. The trials utilized HIV vector to implant
corrected gene and had proved effective in 6 patients in current phase of
trial.( 6 cases is not enough to prove anything in medical trial...)
I had read her FB
and felt sorry and pity about her daughter… well, however using public money to
sent her child for a self paid clinical trial which had not passed the I/II
phase regarding phase is unsuitable from my point of view…but I could
understand a parent eagerness to grab any log during the drowning process…may GOD help them…
I had a friend with
brain metastasis melanoma who had joined a clinical trial of targeted therapy. Even
though with progression of system, the attending surgeon had however kept
assure them there is someone who was cure by their drug, un-ethical thing to
do,luring the patient to adhere to the treatment so they could collect their
data…)
He had followed up
a MRI in our setting recently and the result revealed progression of disease. I
had told his wife that they would need to discuss about DNR and palliative care
option as he could have seizure attack any moment….well, I was a little bit surprise
that the attending surgeon did not advice them on such issue…. Well, blame who
? blame that system, the consultation fee is too low and the doctor could not
spend more for their patients…
And there is much
much more similar cases; patient and family had tried drugs which cannot cure
and/or made them feel better hoping to make the disease go away….. and that is
going on around us everyday….
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