Partnering Hope with Fight
For patients with late-stage cancer, advocacy means exhausting all possibilities. And so the goal of the International Cancer
Advocacy Network (ICAN) is to be the patients' "advocate, clearinghouse, and sounding board, with a meticulous eye to every
detail of their medical records, history, co-morbidity conditions, and treatment plan, while mindfully positioning several
moves ahead at all times in terms of available strategic options," says Marcia Horn, ICAN's president and CEO.
That sounds like no easy feat, but ICAN breaks these goals down through such actions as recommending specialists to patients
on a case-by-case basis, offering counseling for patients and families, interpreting the impact of patient gene expression
profiling reports, and referring patients to relevant clinical trials. "We often make referrals to oncologists who, like us,
are 'manic' about not missing anything in the drug pipeline," says Horn. "A patient can go from one oncologist who says, 'There
is absolutely no hope and you might as well check into hospice,' to someone we refer them to, who will launch a focused and
determined fight for the many months or years that patient has left."
So where other advocacy groups might look at the big picture, acting as the voice for an entire population in a specific therapeutic
area, ICAN works differently—from the bottom up—providing advocacy for each patient one at a time, in a way that is tailored
to the individual, not to the whole. "What we are best known for is providing and explaining comprehensive information," explains
Horn. "It's not unusual for us to hear that our initial phone call or email exchange with a patient is far more detailed than
their entire medical team's interaction with them."
Horn emphasizes the need to work closely with pharma; a need which has only increased in the past 30 years. "Patient advocacy
organizations are becoming far more important to pharmaceutical and biotech companies than ever before. The industry realizes
that organizations that deal with proactive patients need a seat at the table to provide insight into patient choices," she
Especially when it comes to cancer, Horn says, no one individual or entity has all the pieces of the puzzle. "Our most repeated
line in any given day when talking to patients is, 'We don't know, but we will find out for you.' I don't think that we as
a community know even a small fraction of what we ultimately need to know in order to tame cancer into a maintenance disease
and then eradicate it altogether. But patients who are armed with highly trained advocates are greatly advantaged in having
an ally who can help them sort, filter, issue-spot, and translate difficult concepts for them."
Dawn of a New Era
Whether working on rare diseases, speaking for the silent, or encouraging innovation in oncology, the minds behind every patient
advocacy group Pharm Exec spoke with agreed on one thing—there's still work to be done. And technology is helping us do it in ways we never thought
possible. Like putting a man on the moon, the Internet has opened up worlds of possibilities, allowing patients and advocates
to connect with one another, organize their goals, and act on them efficiently. "Before the Internet, the flow of information
and the opportunity to broaden that scope was limited. But advocacy groups who didn't have this ability 10 years ago can now
go on Facebook and meet someone who will say, 'I happen to be doing research on this,' or, 'I know someone working in that
area,' and then follow that trail," says Saltonstall. NORD is leveraging such technology to create disease-specific online
communities, where patients can communicate with one another and decrease the sense of isolation that having a rare disorder
In fact, NORD and other national advocacy groups have partnered with Inspire, a company whose purpose is to build online communities
for patients and caregivers and to help life sciences organizations connect with online community members for clinical trial
recruitment and related services. "Patients have always connected with one another, whether in hospital waiting rooms or doctors'
offices," says Brian Loew, cofounder and CEO of Inspire. "But what is new—what we have now—is the incredible benefit of these
forces working together: the organic, self-organizing activities of patients online, enhanced by the trusted, strategic efforts
of patient advocacy organizations. What this means for pharma, biotech, and device companies is that if they're looking for
active, engaged patient populations, here they are."
ICAN, as well, is leveraging the power of the Internet for advocacy. The organization is currently in the fundraising and
planning stages of creating an online resource called Remission Coach, which Horn says will be a "comprehensive medical information
search engine." In addition to Remission Coach, Horn and her staff frequently use LinkedIn, which she says has exponentially
expanded ICAN's reach to professionals in pharma, academia, and government. "With the rise of the Internet and so much information
at their fingertips," she says, "patients and their families are more informed and empowered than ever before."
As we look to the future, all stakeholders must ask themselves five questions about patient advocacy organizations: Will the
patient movement shift from a homegrown initiative into a more global, broad-reaching endeavor? Will there be further transition
from a focus on specific diseases and therapeutic areas to more direct involvement in product and policy development? Are
there therapeutic areas or other gaps in which the voice of the patient has thus far not been heard; and if so, how can we
identify and fill those gaps? As patients advocate for more rights, more involvement, and more control, what's the tradeoff?
That is, do they have a responsibility to take their health management into their own hands in a positive way, by quitting
smoking, maintaining a healthy diet and exercise regime, being educated on their condition, and increasing their medication
adherence? And finally, how will each of these considerations affect the way industry does business, for the next 30 years