The Cancer
Experience is full of champions and
change agents, people who were passionate about discovering novel
treatments and funding those endeavors to help humankind. We’ve already discussed the science and medical pioneers Dr. Sidney
Farber and Dr. Brian Fisher in our previous post who at the time were villonized
for going up against the status quo, but prevailed by their unrelenting persistence
to practice evidence-based medicine and help others.
Dr. Dennis Slaman
from the UCLA Medical Center was also a champion and change agent in The Cancer
Experience. During the 1990s oncogenes
responsible for the development of cancer were discovered. One such gene known as Her2 was implicated in
some forms of breast cancer. Genentech, a
biotechnology company, recruited Slaman to help gather Her2 positive breast
cancer tissue samples for testing with Dr. Ulrich and Dr. Shepard’s Her2
antibody therapy called Herceptin (chemical
name Trastuzumab). Dr. Slaman felt that
herceptin was so promising that he wanted Genentech to apply for an FDA application
to go to clinical trial, but the company refused because at the time it was a
small company and the expenses for clinical trial would be too enormous. Slaman kept lobbying the company until they
finally agreed to trials among people with late-stage metastatic breast cancer. Herceptin received FDA approval in September
1998. Today herceptin is used to treat
Her2 positive metastatic breast cancer, stomach and esophageal cancers. Had
Slaman not been on the scene advocating for clinical trials, this life-saving
drug may not be available on the market today.
Lastly, Mary Lasker, wealthy
socialite, who in the 1940s through 1970s built political support and private-public
funding that made cancer a national priority and advanced cancer treatments
that saved millions of lives. Mary Lasker
grew up in a small town in Wisconsin where she grew an appreciation for illness
and suffering having experienced life-threatening illness herself and seeing
her beloved caretaker die in a breast cancer ward. She grew her wealth and influence building
her own dress pattern business and marrying her second husband Albert Lasker,
business advertiser for Lucky Strike cigarettes. Mary Lasker had an unwavering desire to help
people suffering from cancer. She
started her journey hosting fundraisers in their home. In 1944, she established the American Society
for the Control of Cancer (renamed the American Cancer Society) to raise cancer
awareness, reduce stigma, and raise money for research.
After her husband
died from colon cancer in 1952, Lasker partnered with Dr. Sidney Farber (Dana
Farber Cancer Research Institute), founder of the Children’s Cancer Research Foundation
and a change agent in science and medicine for his breakthroughs in chemotherapy. Lasker and Farber focused their efforts to
build a cancer research infrastructure known as the National Cancer
Institute. They recruited a diverse
group of scientists, including Dr. Gordon Zubrod, an infectious disease doctor who
previously worked with malaria in the army to head the recently well funded
National Cancer Institute (NCI). The
researchers started a worldwide search for plant compounds in search of new
cancer drugs. Large clinical trials for
childhood cancers and their families flocked to the institute. Changes in the delivery of chemotherapy
emerged, including the 1952 VAMP trials, which looked at delivering four
chemotherapeutics instead of one to fight cancers that were outmaneuvering a
single chemotherapy. She soon realized that private funding alone
was insufficient and began lobbied presidents for policy change and public
funding. Her efforts led to President
Nixon’s 1969 Declaration of a War on Cancer.
In 1971, a cancer bill with bipartisan
sponsorship from Senator Edward Kennedy (Democrat) and Jacob Javits (Republican)
went into legislative action. Lasker’s journalist
friend at the New York Post, Ann Landers wrote an article to influence the
public to write into their politicians titled “If you want to be part of an
effort that might save millions of lives-maybe your own-please stay with me.” Thousands of letters poured into the capital
mailrooms. The result was a $1.6 billion dollars in the first three years towards
cancer research known as the 1971 American Cancer Act.
What qualities did Lasker, Farber,
Slayman and other change agents in The Cancer Experience have in common? And how can knowing this help the ALS
Community?
Malcom
Gladwell in his book The Tipping Point:
How Little Things Can Make a Big Difference (2000) says ideas, products,
messages, and behaviors spread like viruses until they become a type of viral
epidemic or what he refers to as a ‘social epidemic.’ In any social epidemic leading to major
societal changes 80-percent of the work will be done by 20-percent of the
participants.
Three types
of people are required for the “tipping point” to occur, the point at which a
threshold or boiling point is reached where an idea, message, or behavior turns
to real societal change.
(1)
Connectors
(2)
Mavens
(3)
Salespeople
Connectors are the people in a community who
know large numbers of people and who are in the habit of making
introductions. They usually know people
across an array of social, cultural, professional and economic circles and make
it a habit of introducing people who work or live in different circles. They have an extraordinary knack for bringing
the world together.
Mavens are information specialists or
people we rely upon to connect us with new information. They accumulate knowledge, especially about
the marketplace and know how to share it with others. A maven is someone who wants to solve other
people’s problems generally by solving his own.
Mavens start word-of-mouth epidemics due to their knowledge, social
skills and ability to communicate. They
are information brokers, sharing and trading what they know.
Salespeople are persuaders, charismatic people
with powerful negotiation skills. They
tend to have an indefinable trait that goes beyond what they say, which makes
others want to agree with them.
Some people
have two of these skills. Most only have
one. Farber and Slayman were both Mavens
and Salespeople, experts in science and medicine who could communicate their specialized
knowledge to the layperson and sell their ideas to sponsors to fund the
research and pursue clinical trials.
Mary Lasker was indeed a unique individual because she was a Connector,
Maven, and Salesperson. She was well
read and learned more about research and needs through scientists like Farber. She was an extrovert, had a large and diverse
social network, and knew how to use her skills to connect the right people at
the right time and persuade policy makers and entrepreneurs to fund the War on
Cancer. Certainly there were other game
changers in the field that made significant contributions, but without major
funding and political will to make real advancements in cancer we would not
have the multiple treatment options we have today.
The hope to
have effective treatment options for ALS/MND is not out of reach. We must identify our Connectors, Mavens, and
Salespeople to educate, communicate the research and policy reform needs of the
ALS community, and rally policy makers and entrepreneurs to get on board.
May is ALS awareness month. On May 10 the ALS Community will stand strong
at the Capitol. We need to think BIG. Think Mary Lasker and Sidney Farber. Think
War on Orphan Diseases, War on ALS. We
need sufficient private AND public funding for research. And we need policy reform that provides real
incentives for pharmaceutical and biotechnology companies to provide treatments
for people with ALS NOW through Accelerated Access and Expanded Access Programs. Policy reform with Accelerated Access and
Expanded Access Programs will not only affect those living with ALS but those suffering
other diseases. Think BIG. If we can garner this much support with the
ALS Community, imagine how much support there would be if we connected with
people suffering other illness.
