Treatment for All
Talking about the WFH Humanitarian Aid Program with former WFH
President Mark Skinner
Mark Skinner’s life bridges 2 eras of hemophilia treatment. The
former president of the World Federation of Hemophilia (WFH), he grew
up at a time when factor VIII replacement was nonexistent or often
limited, used only after bleeding occurred. Now, he’s a part of this
emerging era when treatment options are multiplying, and prophylaxis
has become the standard of care.
Meanwhile, availability of treatment in the developing world is
lagging. The lack of access to care and treatment in developing
countries is an urgent and important public health challenge, as the
cost of products to treat is prohibitively expensive for the majority
of those affected with a bleeding disorder. That’s why Genentech and
our parent company Roche are providing prophylactic treatment to as
many as 1,000 people with hemophilia A in developing countries over
the course of 5 years, with a focus on high-need patients, such as
people of all ages with factor VIII inhibitors and children without
factor VIII inhibitors. This donation, and others like it, have
enabled the WFH Humanitarian Aid program to provide consistent and
predictable access to prophylaxis.
Treatment for All
Skinner’s efforts in this area are summed up in the WFH commitment
to Treatment for All. We spoke to Skinner about his time as president
of the WFH and what Treatment for All means in practical terms.
“The goal is to bring prevention and early intervention to the
developing world,” says Skinner. “It took 70 years to get to where we
are today in the US. By working with partners, we can shorten that
time in the developing world.”
“We coined ‘Treatment for All’ because we needed a vision statement
everyone could rally behind,” says Skinner. “We knew it wouldn’t be
achievable tomorrow, but it gave us a goal that we could move toward
each year as we made strategic plans.”
Sustainability is crucial to the WFH strategy. “In the early 2000s,
we began asking donor companies to commit to multiyear donations of product.”
Maximizing the Impact
Part of planning is understanding everything people with hemophilia
need, beyond medicine. “As we go into a country, we assess the kind of
healthcare support that’s present. We make sure that we can move
medicine through the system well. We need to be sure that healthcare
professionals and patients will receive the training they need for prophylaxis.”
Genentech and Roche have worked closely with the WFH to maximize the
impact of donated prophylaxis. The WFH identifies those countries that
have both a great need for access to care and also have healthcare
systems in place to effectively use donated treatment. In this way,
they ensure their contributions make the biggest possible difference.
The planning is grounded in a broad understanding of how hemophilia
products must be stored and used in order to benefit patients.
Genentech and Roche are funding training, lab facilities, and
transportation infrastructure, which are all critical parts of patient care.
“Now we can plan, rather than just react to situations,” adds
Skinner.