Okay, I’m sure you’ve all been wondering why I haven’t
mentioned the ALS ice bucket challenge. It is my belief that press leads to
awareness, awareness leads to donations, donations lead to research, research
leads to a cure, a cure leads me to a future with my daughter and husband.
However, and I think I speak for all ALS patients, what we really need is help now,
help today. Statistically, according
to the experts, "A single clinical trial can cost $100 million at the high
end, and the combined cost of manufacturing and clinical testing for some drugs
has added up to $1 billion." Dr. Charcot from Paris discovered the
pathology of ALS in the 1800s, and since then there has been no actual
advancement in a cure for the disease. So, knowing that, I am not going to hold
my breath waiting for a cure from the ice bucket challenge. I am thrilled that it is getting the
exposure that it needs. Thanks to the ice bucket challenge, Martha Stewart now
knows my plight.
I am all for research, obviously, but you know what would be
really cool? It would be super cool to give all this money that has been raised
from the ice bucket challenge to the people who actually have ALS. Give it to
the people who cannot afford qualified caregivers 24 hours a day at $10,000 per
month, give it to the people who cannot afford the out-of-pocket cost of
$1200/month for the medication rilutek that prolongs your life by three months
or so, give it to the people who cannot pay for a specialized wheelchair, specialized
feeding tube formula, massage therapy, respiratory therapy, kinesiology
therapy, aquatic therapy, expensive BiPAP breathing machine rental at $1200 a
month, expensive voice recognition software, expensive diaphragm pacing
surgery. Breadwinners of the family who now have ALS and cannot contribute any
longer. Give it to them. Give it to the people who are trying to heal themselves
holistically through expensive vitamin drips, supplements and specialized
nutrition and therapies. Ozone therapy, infrared saunas, hyperbaric chambers,
acupuncture and cranial chiropractic therapy ain’t cheap. Don’t even get me
started on the cost of psychiatric therapy! Just to put things into perspective
for you I owe Cedars-Sinai Hospital $170,000. I should probably tell them not
to hold their breath either.
Clinical trials? Great, but with people with ALS it’s
usually too late to join the trial. Support groups? Great for some people, but
it’s actually a big pity party. Loaner equipment? Gross, who wants a dead
person’s bath seat? ALS clinics? Great, but all they really do is chart your
demise.
Sorry to be Debbie Downer but these are the ugly cold hard
facts of ALS. I really wish everyone would take their generous donations and
put it into a fund to help the imminent lives of ALS patients who struggle
every day financially. I have never been impressed by any ALS association other
than Project ALS who forces the researchers to share their information with
other ALS researchers, and most importantly Dr. Paul Alan Cox from the Institute of Ethnomedicine. If I was a betting girl, I would put all of my chips
on Dr. Paul Alan Cox.
