What ALS Can Learn from the Cancer Experience: To Move Forward We Must Look Back

To move forward, we need to reflect on the past.  The Spanish philosopher, essayist, poet and novelist George Santayana once famously said, “Those who cannot remember the past are condemned to repeat it.”  Not knowing your history can indeed have devastating consequences both in repeating mistakes but also not capitalizing on opportunities.

 

The Cancer Experience teaches us that developing successful treatments is not easy.  There are a lot of hurdles that must be overcome including technological, financial, political and socio-cultural.  Complicated diseases need a full-forced commitment of funding and political will.  It took decades, billions of dollars, and strong political commitment to fund cancer scientists and medical doctors whose research efforts helped lay the foundation for advancements in medical procedures, radiation therapy, chemotherapies, hormone and immune therapies that we benefit from today.     

This was made possible through huge financial investments not just from private donations, but also sizable public funding.  Mary Lasker and Dr. Sidney Farber spearheaded the private-public funding effort in the 1960s, which resulted in enactment of the 1971 Cancer Act, and billions of dollars in funding towards the National Cancer Institute.  The Ice Bucket Challenge was a major breakthrough in private funding for research, now we need equal commitment for public funding to support non-profit universities, teaching hospitals, institutes and government agencies.  Places such as the Robert Packard Center for ALS Research at Johns Hopkins, National Institutes of Neurological Disorders and Stroke, and ALS Treatment Development Institute. 

The Cancer Experience teaches us that it is important for grant dollars to be flexible and support a diverse workforce of researchers.  The most innovative, game changing cancer therapies came from the minds of new doctors and researchers in the field, people with fresh eyes, willing to take more risks and think out of the box.  People like Dr. Bernard Fisher who in 1958 went against an almost 70 year practice of the radical mastectomy and proved through randomized control trials that women who underwent breast conserving surgery also known as the lumpectomy had the same survival rates as women who underwent a radical mastectomy.  People like Dr. Sidney Farber who in 1947 went against the medical community by giving children suffering with leukemia the experimental chemotherapeutic, aminopterin.  The standard at the time was to make children comfortable until their inevitable death.  Aminopterin allowed some of the children to go into remission.  Had these medical renegades not been hired and given resources, evidence-based practices would not have been developed, advancements in treatment would have been lost.

Today, the lack of research dollars for the biomedical sciences has stymied advancements.  In order for new scientists and medical doctors to even be considered in the applicant pool of 300 or more people vying for the same job, they must already have funding.  To get funding, scientists and medical doctors must be affiliated with a university or a government facility.  A catch-22 occurs, resulting in small numbers of scientists and medical doctors, experienced but not necessarily game-changers; all competing for finite resources.  A substantial amount of grants require a significant amount of preliminary data generated by the Principal Investigator (lead scientist) and proof of success.  Therefore, high-risk projects that may challenge current paradigms or lead to new therapeutics are less likely to be funded compared to “inside the box” ideas.  The ALS Community must identify the Dr. Sidney Farbers and Mary Laskers and pave the way for real commitment through policy change and private-public funding.