What ALS Can Learn from the Cancer Experience: Identify and Support Champions and Change Agents

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. 

As the saying goes, “Don’t put your eggs in one basket.”  Don’t focus on one treatment.  Think BIG.  We want MANY TREATMENT OPTIONS.  Most FDA requests for Expanded Access (90-99%) are approved.  But only when the companies say ‘yes.’  Companies are hesitant to provide treatments to people outside clinical trials for several reasons. (1) They do not want to be sued if someone has major side effects or becomes worse even if it is not due to the treatment, (2) They do not want to pay for the treatment and costs associated with the delivery of that treatment, (3) They do not want to risk possible bad results that would jeopardize their chance of continuing to bring the treatment to market.  ALS Community, Please focus your efforts here.  Work with patient advocates, policy makers, industry, FDA, and insurance companies to come to an agreement.  Find a policy solution to make it easier for companies to say ‘YES’ to Accelerated Approval and Expanded Access Programs.