Empathy in Science, Medicine, and All Policies

“The moral test of a nation is how it treats those who are at the dawn of life, the children; those who are in the twilight of life, the aged; and those who are in the shadow of life, the sick, the needy, and the handicapped.”  -Hubert H. Humphrey (1976) 

Today marks the end of ALS Awareness Month, but the fight lives on for those suffering with ALS, their caregivers, close family and friends, and advocates.  On this last day of May, PALS Campaign reflects on the future of ALS research, treatments, and the community stronghold and calls for Empathy in Science, Medicine, and All Policies.    

It is humbling to see the awareness and interest in private funding for ALS grow, peaked by the efforts of the ALS Ice Bucket Challenge, numerous films and personal accounts in the social media, the Steve Gleason Act, and rallying at the Capitol over GM604.  It is with great sadness that we also realize we are likely decades away from real change.

 

HIV/AIDS and Cancer-two diseases that rose in status from diseases no one wanted to acknowledge or were too overwhelmed or scared to deal with to widespread public awareness and finally major public and private financial investment and policy change that led to the advancement of and access to treatments.  What turned the needle in favor of critical change was the marriage of radical advocacy and science. 

After several years dancing the two-step with politicians, change advocates in HIV/AIDS and Cancer realized they needed to get more radical in order to gain the media attention needed to drive political pressure and shame companies into providing experimental treatments to those suffering and dying of their diseases.  These advocates became so well organized that they knew the date, time, and location of every investment meeting for experimental pharmaceuticals, every NIH, FDA and policymaker meetings and events and every location of the biotechnology and pharmaceutical company headquarters.  Why?  Because these are the ideal locations and times to hold rallies and protest companies that deny access to treatments.  These two movements held funeral processions at company headquarters, honoring those who had asked for treatments, were denied, and subsequently died.  The larger the rally or protest, the more media attention they received.       

           

This alone was not enough to fight the war.  They needed true scholars, people who empathized with those suffering, were well read, well educated and had the necessary skills to guide the movement in the right direction.  These individuals didn’t read a few journal articles or a few web pages on the Internet and assumed they knew everything.  They looked at the issue from all angles-science, medicine, policy, advocacy and sought out content experts, those in government and policy to understand the processes behind FDA rules and regulations, scientific limitations, etc…  They asked the right questions, identified hurdles and sought big picture solutions.  They didn’t focus on one drug or blamed all their woes on one government agency.  They changed how we fundamentally look at drug development, clinical trial design, and created the FDA Accelerated Access and Expanded Access programs.

Interviews with government agency heads and policymakers said the radical protests and rallies grabbed their attention, but it was the scholars that came to them with specific solutions and knew the language of science which allowed them to make real changes that made all the difference in the world.   

Competing interests, financial drain, and low political will prevents us from moving the needle from ALS awareness to fundamental changes: major public-private financial investment in research, developing new clinical guidelines and clinical trial designs for ALS, creation of a mandatory national ALS registry, creation of a health literate, consumer friendly clinical trial search engine, encouraging Accelerated Access of experimental drugs deemed reasonably safe and effective in Phase 2 trials and Expanded Access of experimental drugs and treatments that do not qualify for Accelerated Access.  These goals are within reach if the ALS Community marries radical rallies and protests with sound science.     

PALS Campaign also calls to action Empathy in Science, Medicine, and All Policies.  There are three ways in which we engage with a disease: sympathizing, empathizing, and understanding.  Sympathizing, is feeling compassionate towards someone’s suffering.  Empathizing is getting towards the core of your feelings, trying to picture yourself in that person’s shoes.  And understanding is when someone actually has the disease.  Those with the power of decision making, the doctors and scientists responsible for researching the disease and treating patients, the businesses that hold future treatments, and policymakers that make decisions on the processes and incentives in place may show sympathy towards those with ALS.  Unless they themselves have ALS, they can never truly understand what it is like.  But the call to action is this-Let Empathy drive your decisions in science, medicine and policy.  Imagine yourselves in the shoes of someone with ALS.  If you lost your ability to walk, eat, speak and move, how would you like to be treated in clinic?  What would your priorities be in scientific development?  Wouldn’t you want policymakers, industry, government, advocates to work together to provide more options for treatments?