Cingles Info

ALF Leader Shares Goals, Vision - By: Tamra B. Orr
Summary:
New CEO says hepatitis to remain main focus
Story:
It may seem like a huge leap to go from protecting chimpanzees to helping
prevent liver disease, but for Frederick G. Thompson, the new president and CEO
of the American Liver Foundation, it was just a small step. "Anyway you cut it,"
he says with a warm chuckle, "I am still working with primates."
Thompson goes on to point out that the two organizations - the Jane
Goodall Institute and the ALF - really do have a lot in common. "The issues
within most nonprofit organizations tend to be the same: raising the resources
we need to carry out our mission," he explains. "It takes a great deal of
passion on both landscapes and people who are truly dedicated to their goal."
It is clear that not only does Thompson have the necessary passion, he
also has the savvy and experience in fund raising and public relations to make
the ALF's mission stronger and more possible than ever. In addition to being a
strong leader, he is a father of one son, grandfather of twin grandsons and an
amateur guitar player. Not too surprisingly, he spends his few moments of "spare
time" reading liver research literature, going to more than a few public events
and traveling.
Chapter by chapter
Since 1976, the ALF has focused on helping people keep their livers
healthy and strong, either through prevention or treatment. It accomplishes this
goal primarily through 26 chapter offices scattered throughout the country,
which sponsor local programs and work on legislative issues at the state and
national level. A great deal of the ALF's emphasis is specifically on hepatitis
- a focus that Thompson supports. "It is certainly safe to say that at least
half of our work focuses on hepatitis," he says. "It takes significant amounts
of our time and resources and figures prominently in our mission statement.
"Our chapters are the means by which we fulfill our mission," says
Thompson. These chapters are the lifeblood of the organization and they are
gaining in number and strength. In 2000, they covered approximately 60 percent
of the U.S. population. The goal of covering 75 percent now has been met and
surpassed. "We are at a little over 80 percent right now," says Thompson, "and
although we want to continue to grow, we want to do it strategically. We do not
want to be in a geographical area just to be there, but (we want) to find the
way to most effectively serve the population of the region. In the meantime, we
are focusing strongly on strengthening the chapters we already have."
With an exceptionally strong background in fund raising, Thompson may well
be just the person the foundation needs in order to get the financial resources
that will allow it to accomplish its goals. His marketing experience won't hurt,
either. "Liver disease is vastly underrepresented and misunderstood by the
public," he says. "A recent survey we sent out told us that half of the
population did not even realize hepatitis was a liver disease. It is a major
public relations and marketing job to truly raise the public's awareness about
symptoms, treatments and cures. Communication is a key part of that. We simply
must continue to get liver disease into the public health agenda and to educate
people on the importance of livers."
Recently, the ALF has launched a new public relations initiative focused
on doing just this: teaching people about the factors surrounding hepatitis and
other liver problems. This program includes all new public service
announcements, a new logo and a "brand-new look and feel," as Thompson describes
it.
"We are re-energizing and updating everything," adds Thompson. "The board
feels strongly that we need to redouble our efforts to bring liver health to the
public's attention. That is the only way we can attract the resources we need to
truly fulfill our mission. We have a continually increasing need for money to
expand and develop our efforts on behalf of all kinds of liver disease. We also
need to attract money for research from both individuals and the federal
government."
Like with any other nonprofit organization, money is always an issue. In
2000, the ALF stated that it would be asking the government for a substantial
increase in funding. In fact, they planned to receive $404 million between then
and 2007. How did they do? "Well . we have been extremely successful in asking,"
says Thompson with a smile. "We are continually getting the language into the
appropriation reports, but getting the money itself has been a real challenge.
Each year we have achieved modest raises, but there is a lot of competition for
funds out there."
Think again
Another focus the ALF described in 2000 was one in which a specific group
at high risk for HCV would be targeted and then used as a model for the
education and treatment of other groups within the general population. The
effort began with veterans. "That project was very successful," says Thompson.
"It showed that you can focus on a finite population and get significant
results. Now we plan to replicate this with other high-risk groups."
Through its new program THINK B (The Hepatitis Information you Need to
Know), launched in November, the ALF is focusing on Asian-Americans. Without a
doubt, this group is the most severely affected by hepatitis B and is at the
highest risk for contracting the disease. The latest statistics show that as
many as one out of every 10 Asian and Pacific Islanders (APIs) are chronically
infected with hepatitis B. San Francisco, Los Angeles and New York will be
targeted first because of their high Asian-American populations, according to
Thompson.
"We, along with our partners Idenix-Novartis, Bristol Myers Squibb and
Gilead, also plan to work with Chinese-Americans and Vietnamese-Americans," he
says. The program includes a partnership with local community organizations for
holding the largest hepatitis screening program in history, as well as educating
a specific group about the risk associated with the virus. "Screening is the
first step in stopping the spread of this deadly virus," says Thompson. "Because
two-thirds of the people with hepatitis B have no symptoms, many people are
unaware they have the disease and may be passing it on to their families, loved
ones and sexual partners."
The next group to be targeted for the THINK program is African-Americans
(not just those born in the United States but also African immigrants) as they
have a high incidence of both hepatitis B and C. A third group Thompson wants to
zero in on is the incarcerated. "Some statistics show that the incidence of
hepatitis C in prisons is between 30 percent and 35 percent," says Thompson.
Other goals, other issues
One of the ALF's major goals is coming up with a specific liver health
number that can let people better understand how their livers are doing. "The
country's interest in health care is certainly going in the direction of disease
prevention," says Thompson. "We redid our strategy plan in 2004 and put an
emphasis on liver wellness. We want to be able to define that for people and to
teach them how to evaluate it through a key number. It would be similar to how
certain cholesterol numbers indicate a higher risk of cardiovascular disease.
Liver disease doesn't present in any obvious fashion, so the key has to be
earlier detection and assessment."
Thompson is involved in many of the issues that face those who care about
liver health today. He says that the ALF is currently in favor of pending
legislation concerning viral hepatitis screening and vaccinations.
Thompson and his organization strongly oppose the concept of directed
organ donation, an activity that exploded in popularity following a Houston
man's effort to procure a new liver through billboard advertising and the
internet. "While there are many variables that contribute to one person's
ranking on any organ wait list, with liver transplants, simply put, the sickest
patients are at the top of the list," says Thompson. "The ALF believes that the
current mechanism for donation is the best one. Improvements and refinements
could be made, but we are not in favor of this Wild West approach. It brings up
all kinds of medical and ethical issues.
"We get calls from people seeking livers all the time," he continues.
"They want to know if we can put them at the top of the list and, of course,
they offer a generous donation to go with it. I do believe that we need to do a
better job in the area of organ donation, but to do this, we have to renew our
efforts to create an awareness of donation options."
The ALF's chairman, Dr. James Boyer, agrees. As he puts it, "It is a sad
state of affairs when organ donation levels are so low that desperate and
improper measures are undertaken to secure a transplant, which is why the ALF
and its medical community firmly stand behind the MELD/PELD system that's in
place, and while we recognize that the process for the allocation of livers is
not perfect, it is a system that strives for fairness and equability."
As a nonprofit organization dedicated to helping people stay healthy and
live longer, the ALF has numerous challenges ahead of it. The foundation needs
to increase liver health awareness, increase hepatitis B and C screening in
high-risk populations, continue to provide research for effective treatments and
cures, keep revising and improving the donation process, and, of course, raise
the money to do all of the above. With Thompson at the helm, it looks like the
foundation's chances of achieving these goals are improving.
Other ALF survey results showed that:
. A majority of U.S. adults (84 percent) know that they cannot survive
without their liver
. Two-thirds of U.S. adults (67 percent) realize that a living person can
donate a part of their liver to someone else
. More than one in four U.S. adults (27 percent) did not identify the
liver as the organ that is primarily affected by hepatitis
. The majority of U.S. adults (86 percent) are not aware that the
incidence of liver cancer is on the rise in the United States
. More than half (60 percent) of U.S. adults did not know that hepatitis
B can lead to liver cancer
. Only 42 percent of U.S. adults know that vaccination is one of the best
ways to prevent contraction of hepatitis B
. Four in five U.S. adults (80 percent) believe that alcohol abuse is the
leading cause of liver disease
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