Nirali Naik is a young girl with leukemia (ALL). ALL responds well to bone-marrow transplant but because she is Indian it was unlikely that she would find a matching donor in the national bone-marrow registry. Her parents became proactive and coordinated bone marrow screenings for Indian Americans across the US. They also set up a website that updated everyone on their daughter's condition. Take a look at their website and spend some time reading the section Updates about Nirali to get a better idea about what this family has gone through.
Donald Berwick, the president and CEO of the Institute for Healthcare Improvement and once called the third most important person in American healthcare, gave a speech in 2002 titled "Plenty." He emphasized the importance of focusing on the abundance of resources that patients and physicians have at their disposal, namely the patients and their families!
"Patients and families bring to us their expertise, their commitment to themselves, their love of each other, their houses, their gardens, their hobbies, and most of all their innate, natural capacities to heal. Nature has spent 3.8 billion year of R&D developing biological healing capacity, and it walks into our doors -- free, for nothing -- wanting to help get done what we are trying to get done -- survival, healing. The selfish gene wants to work for us."
I believe that the Naik family is what Dr. Berwick has in mind. If we can get patients and families to be as involved and educated about their health as this family has been, I believe we gain a tremendous ally in our fight to better healthcare. If you would like to read more by Dr. Donald Berwick, pick up his book Escape Fire: Designs for the Future of Health Care.
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