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"There are very, very strong correlations between MS and [people] being out of
work and unable to earn a decent living."
-Sharon Haffenden
For the patients with autoimmune diseases, drug costs are only one part of
the equation. Yvonne Norton, for example, built an extension on her home to
provide a downstairs bathroom and office area, because stairs are difficult for
er. Also, financial difficulties challenge many autoimmune patients, says
Sharon Haffenden, director of research and services at the UK's MS Society.
"We're working here with diseases that are diagnosed when people are in their
20s or 30s, so it's going to have an impact for people in the prime of their
lives." Research conducted by the UK charity, Leonard Cheshire, shows that
people disabled with diseases such as MS are seven times more likely to be out
of work and claiming disability. "There are very, very strong correlations
between MS and [people] being out of work and unable to earn a decent living,"
Haffenden says.
Social Costs
As Yvonne Norton found, the economic costs of autoimmune diseases are only
one part of a complex story. These conditions, chronic and debilitating as they
are for the patients, also have an impact on loved ones, such as Norton's
husband Peter. "I always say that I'm the one with lupus, but Peter's the one
who suffers from lupus," Norton says with a rueful laugh. "It's changed his
life, too. He can't take certain jobs now because there are times when I just
need him to be able to get home quickly, and that sort of thing."
This is a common experience, adds Haffenden. "In many cases, the spouse very
much becomes a [caretaker]," she says. "They often have to reduce their own
working hours or give up working altogether.
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More than 70% of the costs to society from disability are borne by informal
caregivers, such as husbands or wives, according to the research of Paul McCrone
and Martin Knapp from Kings College London. (The UK's MS Society funded the
research.) "In MS, we've found that despite all the brouhaha over drug costs,
the main cost to society is through informal care," Haffenden says. Overall,
multiple sclerosis costs the United Kingdom roughly £1 billion a year, she adds.
Also, because autoimmune diseases more commonly affect young and middle-aged
women, children also feel the impact. "My two sons were eight and five when I
was diagnosed," says Norton. "They've grown up with a mum in a wheelchair. It
was a big deal for them."
Yvonne Norton puts it this way: "It's a complete lifestyle change for those
who have got it badly. We just know it's going to be there forever."
A gram of IVIg costs around $70so a
2gm/kg infusion cost is 15000 to 20,000 a month
Most autoimmune diseases affect women more than men. In most of the disease
shown here, women get them four or more times more often than men. Only two of
the diseases show roughly equal gender percentages, and just one - ankylosing
spondylitis - occurs more often in men.
SOURCE : CIDPUSA.