Rare Doctors, Rare Diseases, and the Church
By Brian Mavis
Robert was born a perfectly healthy boy. But as his first birthday approached, his mom noticed he wasn’t progressing in his development like he had before. In fact, she was afraid he was regressing. Robert’s parents took him to see several doctors, but none of them knew what was happening to Robert. After a few more months, Robert had become completely limp, even to the point of not showing facial expressions. He became entirely unresponsive.
Over the past 10 years, Robert’s parents have taken him to dozens of specialists at the best hospitals in the country. They spent more than a million dollars trying to discover what is wrong with Robert, all to no avail. That’s where Dr. Jimmy Lin enters the story.
Jimmy Lin and RGI
I met Dr. Lin a short time ago when he relayed Robert’s story to a group of Christian leaders. Besides being a devout Christian, Lin is a physician and computational geneticist. In other words, he is a rare doctor who takes on rare diseases.
When Lin was a Johns Hopkins medical student, a 5-year-old boy was brought in by his parents to see if the doctors there could discover what was wrong with him. The boy was curled in a wheelchair and experienced extreme and unexplained attacks of pain. The boy’s parents had already taken him to the Mayo Clinic, Harvard University, and other top hospitals. After running every test they could, the doctors at Johns Hopkins confessed they also did not know what was wrong. Lin’s heart broke when he saw the parents’ response to the news that their son had a rare genetic illness. “I remember them walking down the hallway and wondering where they would go next,” Lin said.
That incident helped prompt Lin to found a nonprofit called the Rare Genomics Institute (RGI). There are 7,000 rare genetic diseases afflicting 250 million people. But because each of these diseases affects relatively few people, little funding goes to studying these diseases, and no one is really helping the people suffering from them. Solving this problem is RGI’s mission.
In the 1990s, Francis Collins, another Christian physician-geneticist, was appointed director of the Human Genome Project (HGP). Through Collins’s leadership, HGP was able to sequence the human genome. It took 10 years and $3 billion to do it. Today RGI can sequence a human genome in only a few days for just $2,500.
RGI gives families whose children have rare and undiagnosed genetic conditions access to genome sequencing. They have done this by leveraging several things: the falling costs of DNA sequencing; the trend in online, social giving (generically referred to as “crowdfunding”); and the care of genetic scientists who give their time and talents to solve genetic mysteries.
RGI is a hub connecting patients to financial resources and genetic scientists. Lin’s goal is to provide a place where any patient can fund any research on any rare disease.
The Church and the History of Health Care
The church has always been most powerful when involved in four areas: evangelism, education, poverty, and health care. The history of Christianity has been a history of health care.
The church founded the first hospitals in nearly every country in the world. But when you see a secular hospital today, it is easy to overlook how this institution grew from the body of Christ. When an epidemic struck in the ancient world, Christians took care of people, no matter if those people were Christian or not. For example, when a deadly and multiyear-long plague hit Cyprian in AD 250, the Christian community was the only group that cared for the dying, disregarding the danger to their own lives. Gary Ferngren, professor of history at Oregon State University and author of Medicine and Health Care in Early Christianity, said Christians did this because early Christian philanthropy was informed by the theological concept of the imago Dei, that humans were created in the image of God.
Not only does the church see humans compassionately, but we also should see progress in science health care positively. As Francis Collins said in The Language of God, scientific discovery can be a “form of worship.” Or as Nicolaus Copernicus said more elaborately, “To know the mighty works of God, to comprehend His wisdom and majesty and power; to appreciate, in degree, the wonderful workings of His laws, surely all this must be a pleasing and acceptable mode of worship to the Most High, to whom ignorance cannot be more grateful than knowledge.”
Back to Robert
When Lin met Robert, the boy had been unresponsive for more than a decade. Robert’s parents had been to dozens of specialists and had depleted their financial resources trying to discover what was wrong with him.
Through the RGI crowdfunding website (raregenomics.org), Robert’s parents were able to raise $7,700 from 169 people, each of whom gave $50 or less. It was enough money to sequence the DNA of Robert and his mother and father. A few days later, doctors knew what was wrong with Robert. There is no known cure for his disease, but there was good news. His disease was a muscular condition, not a mental condition. In other words, Robert’s mind was perfect. And now, using more cutting-edge technology, Robert and his parents have been able to communicate with one another in ways that were never before possible.
This combination of parental love, medical technology, and social funding is powerful. It mobilized friends and family to give in order to do some of the world’s most sophisticated research by partnering with some of the world’s most advanced scientists to care just for Robert.
The Church and the Future of Health Care
Jimmy Lin is a great example of a Christian leader who has combined the theological compassion of imago Dei with the perspective that scientific discovery can be worshipful. Out of that he has created an innovative, individualized, and proactive approach to health care. This is how it should be, because Lin’s work is the natural result of the “DNA” found in the body of Christ.
Christians have no business trailing 10 years behind the best research and best practices. Rather, we should be discovering and creating breakthroughs for the glory of God and the good of humanity. The church has an opportunity to scale what RGI has started. In the next 10 years, sequencing will be commonplace. By coming alongside leaders like Dr. Lin, the church can continue its legacy of leading the world in health care, and more importantly, it can help millions of kids who suffer today with rare diseases.
1Francis Collins, The Language of God: A Scientist Presents Evidence for Belief (New York: Free Press, 2006), 230.
Brian Mavis is executive director of the Externally Focused Network. He also serves as community transformation minister at LifeBridge Christian Church in Longmont, Colorado.