83. Peter Kang, Pediatric Neurologist and Director of Muscular Dystrophy Center

In this episode of The 92 Report, Peter Kang attended medical school in Philadelphia where he had a wonderful experience at the University of Pennsylvania, learning about different fields and cultures, and making friends. One pivotal moment in medical school was during a physician patient relationship course led by a thoughtful psychiatrist who reminded him that it’s a routine experience for the doctors, but it could be one of the most pivotal moments in the patient’s life, and they can remember everything about their encounters, which has been helpful to him throughout his career.

A Career in Pediatric Neurology

Peter chose pediatric neurology as his field of study, completing most of his training in Philadelphia and New Haven. He spent over a decade in Boston, where he gained valuable exposure to both the Boston area and New England. His mentorship from a well-known geneticist, Luke Konkel, helped fill a crucial gap in his career as a physician scientist. This experience gave him a strong background in genetics and has been useful to him up to this day.

Peter's research interests include rare diseases. In his clinic work, he deals with these patients daily, as they might be one of only a few dozen people in the United States with that particular diagnosis. The challenge is finding enough patients to prove that a treatment works or an idea about the disease is valid. Peter also runs a research laboratory and spends much of his time supervising the lab. However, he finds it both interesting and useful to be able to connect his work in the lab with his work in the clinic. 

Genomics Research and Genetic Diseases

Peter discusses his experience running a research lab and how it has evolved over the years. He started his independent research laboratory in Boston and later moved to Florida in 2013. He learned about running a lab from his mentor, which involved a lot of subtleties and was a lot like running a small business in terms of financing, grant applications, and hiring and managing personnel etc. The lab's focus is on genomics research, which helps identify patients with genetic diseases that don't have clear diagnoses. He explains some of the difficulties they run into and how they approach mystery diagnosis.Peter is currently a professor at the University of Minnesota, where his lab is based. He moved to Minnesota during the COVID pandemic. He and his wife were initially excited about moving to Minnesota.The move was motivated by the opportunity to work with a renowned muscular dystrophy center at the University of Minnesota, which had a unique focus on the condition. 

Finding Solutions to Mystery Diagnosis

Peter's lab has been working on finding solutions to mystery diagnosis in genetic testing, which has been a focus for over a decade. He believes that genetic testing can help solve these mysteries and is working towards a more accurate understanding of genetic diseases. Peter discusses the challenges of treating rare neurological diseases, particularly in children. He highlights two types of diseases that have been challenging to diagnose and treat: muscular dystrophy and spinal muscular atrophy. Muscular dystrophy is a childhood disease, with milder forms starting in adulthood. Duchenne muscular dystrophy is a well-known example, with patients often experiencing difficulty walking and falling as they grow older. Genetic testing has become more effective in diagnosing these diseases, but there are still shortened life expectancies and increased dependence on others for activities. Spinal muscular atrophy is another type of disease that is not technically classified as muscular dystrophy but is also seen in neuromuscular specialists. The most severe form of this disease was typically fatal by the age of two years due to motor neuron loss in the spinal cord. However, in 2016, the first FDA treatment for spinal muscular atrophy was approved, which has helped children to walk normally and avoid ventilators.

Screening Programs and Metabolic Disorders

Peter talks about the newborn screening programs that have been around for several decades, with each state offering slightly different panels of tests. The original screening tests focused on metabolic disorders, which could be treated by eliminating certain nutrients from the baby's diet. Newborn screening has evolved to include spinal muscular atrophy and genetically based tests. Some metabolic disorder diseases have been cured now, with some being cured through diet changes and new therapies being developed. However, Peter highlights the fact that the exact cure depends on how the word "cure" is applied, which is a topic of discussion among inpatient communities. Overall, he emphasizes the importance of early detection and treatment for rare neurological diseases to improve outcomes and overall health.

Peter discusses his experiences dealing with pediatric patients and how he is constantly developing his interaction skills. He emphasizes the importance of understanding the patient's perspective and avoiding taking sides. He also shares his experience of dealing with multiple people in the room, including parents and spouses, and how to navigate these conversations effectively.

Challenges in Pediatric Medicine

One challenge in pediatric medicine is dealing with multiple people, and sometimes there may be a difference of opinion between the child and their parent. To address this, he suggests documenting both sides of the medical record and discussing the perspectives of both parties. When discussing a child with muscular dystrophy, he advises communicating the diagnosis to the parents and the child, considering their age and preferences. He also advises being candid about the prognosis and focusing on the positives. He does not spontaneously discuss life expectancy during clinic visits due to its unpredictable nature and the hope that new therapies will come online for these patients.

Advances in Biotechnology

Peter talks about advancements in biotechnology. In the past few years, there has been an inflection point in biotech with advancements like RNAi, Moderna, and other technologies. There is an incredible array of technologies available that were not available in the past, such as small molecules, gene therapies, stem cells, and proteins. The interaction between academia and the biotech industry has become more collaborative, and there is a better understanding that they are working towards the same goals. Peter states that, in the future, there will be more genetic or molecular solutions specific to certain targets for treating both rare and common diseases. This specificity will continue to grow, and there will be ways to accelerate the pace of developing tailored treatments.

Harvard Courses and Professors on Influence

Peter mentions two gratifying courses that still resonate with him today. One was Philosophy 168, taught by John Rawls, which helped him understand Kant's ethical theory and how to see things from a different perspective. Another course was Expository Writing 52, taught by Richard Marius, who showed him how powerful writing could be and how words can influence people's behavior. Peter believes these courses have helped him develop confidence in his writing abilities and have prepared him for the challenges of personalized medicine in the coming decades. He is looking forward to the developments in the biotech sector and the potential for personalized medicine to become more of a reality. He recalls a conversation with Richard Marius, who encouraged him to bring the story to life and that it's okay to write about one's family. He also discusses how his education as a philosopher major has helped him with thinking and analysis, and achieving clarity around a particular issue or ethical dilemma. He uses this knowledge to resolve complex issues and helps patients make informed decisions about therapy options.

On a global scale, Peter addresses the resource allocation for Rare Disease Research, which is a thorny problem due to limited resources. He believes that it's crucial to not let individuals with rare diseases be left behind, as they often feel isolated and struggle to find others who understand their condition. 

Timestamps:

04:20 Rare disease research and clinical practice

08:52 Running a research lab, genomics research, and mystery diagnoses

14:03 Muscular dystrophy diagnosis and treatment

20:00 Treating and curing neuromuscular diseases in children

28:26 Communicating with children about serious illnesses

32:57 Rare disease diagnosis and potential treatments

38:13 Personalized medicine, gene editing, and philosophy

43:00 Writing skills, ethical dilemmas, and rare diseases

CONTACT:

https://med.umn.edu/bio/peter-b-kang

https://www.linkedin.com/in/pbkang

[email protected]