PAOH President’s Message: On the Dental Profession

…When did we lose our empathy, compassion, and humanity?

By Steven Perlman, DDS, MScD, DHL (hon)

“If you want others to be happy, practice compassion. If you want to be happy, practice compassion.” ~ Dalai Lama

I recently had an experience that both angered and depressed me. As President of People Advocating for Optimal Health (PAOH), my mission is to improve access to quality healthcare for people with disabilities throughout their lifespan. This includes those with physical, intellectual, and developmental disabilities.

My generation of dental professionals are now “old dogs.” When we opened our practices, we reflected upon who we were. We were empathetic, caring, compassionate, had pride in what we did and who we were, and it was demonstrated by our humanity. We knew the secret in caring for our patients was caring about them. Treating our patients with disabilities was difficult, we received little clinical and didactic training, but like Larry the Cable Guy, we “got er done.”

Corporate Dentistry and Dental Support Organizations (DSO’s) have taken over the profession, venture capitalists are buying up financially successful practices, and many recent graduates are recruited and will be employed by them.

Recently, one of the board members of PAOH reached out to me to help a family access dental care for their twin sons. At four months of age, the boys were diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), a rare and aggressive immune disease. Years of chemotherapy, bone marrow transplants, countless blood transfusions, and hospitalizations have taken its toll on the family who pushed forward with outstanding medical care, love, grit, and resilience. Besides the physical, emotional, and mental stress, the complexity of their medical conditions drained their family resources.

The boys are now eighteen and in need of some sophisticated prosthetic treatment. They are excellent patients and in need of some cosmetic procedures to help with their self-esteem. Typically, dental insurance has limited coverage and the financial burden on the family was excessive. They live in the Los Angeles area and were willing to travel a distance to access care.

I immediately agreed to help as I trained pediatric dentists at Boston University, who were from California. I reached out to my contacts through my work in Special Olympics and interactions with the schools. I thought this would be a one-call ask and instead it turned into a three-week ordeal. Programs refused to see the patients, they claimed to be financially strapped. Others came up with multiple excuses why they couldn’t see the boys. Where is the State Dental Director that allows this culture to exist?

After reviewing the x-rays, we realized that most of the extensive and complex procedures couldn’t be performed currently due to the boys’ young age.

All I requested from the places I called was for someone to welcome the family into their office, to examine them and provide a treatment plan, to give mom a hug for all they were going through and tell her that we do care and that they matter. No one was willing to do that.

I finally reached out to a friend who is the Executive Director of PDS Health Foundation who immediately said YES! Yes to care, yes to a family that had endured so much pain, suffering and uncertainty, and only wanted what every parent wants, the best possible health care for their children.

“Corporate Dentistry and Dental Support Organizations (DSO’s) have taken over the profession, venture capitalists are buying up financially successful practices, and many recent graduates are recruited and will be employed by them. ”

Before I reached out for referrals for the boys, I had asked their mom to write a brief medical history so I could include it in my request for the initial consultation. Her letter is attached below.

Letter from mom:

“My twin sons, now 18, have just graduated high school, were accepted into the University of their choice for the fall 2025 semester, and are not preparing to embark on a two-year mission for our church. They are a mix of nervous and excited—what their little sister calls “nercited”—but before they go, we have one more battle to fight: their teeth.

Their teeth are a tragic legacy of their childhood. As infants, my boys endured weekly chemotherapy and steroids to survive, as a result, they have smaller teeth and root bases than most people. Two different children’s hospitals told us their dental health wasn’t a major concern, but now they are 18, they face significant and costly dental work-at least 30,000-40,000     each. It is incredibly disheartening to realize how their dental care slipped through the cracks after we spent their entire lives fighting for their health.

This is a story that began more than 18 years ago. On February 23, 2007, our four-month-old son, Ethan, was admitted to CHLA. A few days later, he was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), a rare and aggressive immune disease. We were told without a bone marrow transplant; there was a zero percent chance of survival. Because his identical twin, Keane, was also at high risk, we had his blood sent to a specialist in Cincinnati. The results came back positive. Just three days later, Keane became critically ill with the same symptoms and was admitted to CHLA to begin the same chemotherapy and steroid protocol.

Over the next four and half months, the boys were in and out of the hospital with fevers, underwent weekly blood and platelet transfusions. During this time, we help several bone marrow and blood drives to raise awareness for HLH and find a donor. Our efforts led to the creation of a permanent Bone Marrow Registry and Blood Drive Program at Warner Brothers Studios, a legacy the boys have left behind.

In May, we found a 9 out of 10 donor match. We were overjoyed, but in July, for reasons we still don’t know, we lost their donor. It felt hopeless and devastating setback. But in August we found their actual donor. Their transplant was scheduled for September 21.

On September 14, just one week before their life-saving transplant, Ethan suffered a massive seizure and brain bleed. Despite this devastating complication, Ethan and Keane received their bone marrow transplants on September 21, 2007. Keane was discharged just before Thanksgiving in November, but Ethan remained in the hospital for months, relearning to walk and eat. The seizure had caused significant damage, and he didn’t come home until January 1, 2008.

After years of monthly lab draws and doctor visits, the boys were finally declared “out of the woods” by their doctors on their sixth birthday. However, Ethan’s journey was far from over. Because of the brain bleed, he has struggled with left-side cognitive development and learning disabilities. For the last 18 years, he has been in multiple therapies to build basic life skills to help heal his brain.

We are so incredibly blessed that our sons survived. Many children do not. We know a healthy confident smile would mean the world to them-especially Ethan, whose teeth and confidence were affected the most. It would be truly life-changing and give them the confidence they deserve as they begin their next chapter.”

It is inconceivable to me that teaching programs, educators and clinicians did not see it in their hearts even to meet with the family and provide a warm welcoming dental home for them. Shame on us and the dental profession for what we have become.

Steve Perlman, DDs, MScD, DHL (hon)

PAOH President