 
Step by Step wants research
funded fairly
Marcello compares death
rates, funding for AIDS, transplants
By Alan Patarga
The sure thing is that once
again George Marcello will have people debating. Whether or not he will
also achieve his goal of a redistribution of research funds in Canada,
remains to be seen. For the founder of Step by Step, however, the die is
cast.
A survey carried out by this organization, which has been raising
awareness on organ donation for a decade, sheds light on the comparison
between research funding for different illnesses and the real danger
they pose.
Results will undoubtedly be controversial. George Marcello anticipated
them in an interview with Corriere Canadese/Tandem. "Our survey showed a
definite lack of proportionality between research funds allocated a
given illness and the probability that that illness will lead to the
patient's death. This lack of proportionality, sad to say, is mostly due
to an overestimation of AIDS. In fact, if we check the number of deaths
among HIV-positive patients, we find that they amount to a few hundred
per year, with a slowly but clearly descending trend. On the other hand,
people increasingly die of cancer or cardiovascular diseases. Both kill
tens of thousands every year. Well, the funding for cancer and heart &
stroke research is only higher than those on AIDS research in absolute
terms. If we divide those funds by the number of patients at risk, we
find a terrible fact: there are class-A illnesses, and class-B
illnesses."
FIGURES
According to the survey, in fact, cancer research has been allotted,
from 1999 to 2006, about $770 million, while killing on average nearly
60,000 Canadians each year. Over the same period, the Canadian
Institutes of Research have given just over $530 million for research on
cardiovascular diseases, which killed similar numbers. AIDS research, on
the other hand, would have received over $200 million, while causing 600
deaths per year. "We do not mean to deny the danger posed by AIDS,"
remarked Marcello, evidently aware of the controversial nature of his
argument, "and of course without a lot of research on AIDS, we would be
seeing many more deaths in Canada. But either AIDS research is
over-funded or - and this is my opinion - other, more dangerous diseases
are under-funded: expenditure per death amount to $1,400 for
cardiovascular diseases, $1,900 for various kinds of cancer, and $55,000
for AIDS. Clearly, something doesn't add up."
TRANSPLANTS NOT IN THE PUBLIC SPOTLIGHT
Why does an organ donation activist, with a long history of transplant
advocacy, deal with these issues? "It's simple," replied Marcello; "most
of these under-funded diseases - such as cancer, heart and circulatory
diseases, pneumonia, liver and kidney diseases - can often be resolved
with a 'simple' organ transplant. You change the organ, the patient
survives." In summary, the "injustice" that George Marcello sees mostly
refers to the sector of organ transplants, "with a disease funded 30
times as much as another, essentially out of political correctness:
because in the past 15 years media and pop stars fought almost
exclusively that battle. This is the result."
A SIMILAR SITUATION SOUTH OF THE BORDER
The idea for this survey came from Marcello's encounter with Dr. Richard
Darling, chair of the California-based Fair Foundation that's been
engaged in a similar campaign in the United States since 1999. "Eight
years ago," explained Dr. Darling, who to date has survived Hepatitis C,
diabetes, cirrhosis and liver cancer, coma, a stroke, liver and kidney
failure, muscular dystrophy and no fewer than three liver transplants,
"I began to notice the imbalance existing in the USA in the field of
scientific research, with AIDS enjoying a favoured status, thanks to
high-impact media campaigns, that would be more appropriate in Africa,
but certainly not in our countries. Just think that, in this atmosphere
of political correctness, Washington spends more money on climate change
than on curing brain cancer, cystic fibrosis and six-thousand other
orphan (rare) illnesses. Then I met George Marcello and his battle and I
thought that such a strong and clear voice as his might break the wall
of silence that surrounds us. For this reason, next month I will be in
Toronto with him to attend a public event organized by Step by Step;
together we shall study a North American tour."
Marcello plans to cross the border
For George Marcello, crossing the 49th parallel will be just another
step in his journey for organ donation awareness. It's been a 10-year
odyssey that has focused on Canadian policy, but his battle may now
extend to the United States.
"We are considering it," said Marcello. "We could organize a wide tour,
touching most if not all States, thus spreading our battle for awareness
on organ donation to the whole of North America."
In the past few weeks, a prestigious California-based medical foundation
- the FAIR Foundation - contacted Marcello after following his moves for
some time, asking him to co-organize a series of initiatives that, if
properly timed, would amount to a tour of a significant portion of the
United States. "This organization," explained the Italian-Canadian
founder of Step by Step, "has been fighting for years to draw attention
from politicians and media on 'forgotten' diseases. The real paradox is
that these diseases get penalized in terms of funds for research and
prevention."
Publication Date:
2007-04-01
Story Location:
http://www.tandemnews.com/viewstory.php?storyid=7168 |
