World Down Syndrome Day 2024 – Remarks from Rick Rader

Listen to Rick Rader’s (MD, FAAIDD, FAADM, DHL) address as presented to the United Nations, March 22, 2024 as part of the World Down Syndrome Day 2024 Conference hosted by Down Syndrome International.


Transcript

My name is Dr. Rick Rader, and I am a physician.

Since there are 13 million physicians in the world; that in itself does not make me either rare or special. What does make me somewhat of a rarity is that for 30 years I have dedicated my career to the care, support, and treatment of individuals with Down syndrome and other developmental disabilities. Those of us who have had both the opportunity and privilege to align ourselves with underserved patients are undoubtedly few and far between.

It is well documented that people with disabilities do not receive the comprehensive healthcare, including oral healthcare, that they both need and deserve. This results in a shorter lifespan, more hospitalizations, increased untreated co-morbidities and a decreased opportunity for independence and self-determination.

While there are numerous reasons for the health disparities in the disability community, I want to address the one outstanding criteria that is both long standing and neglected…. medical education.

There are 1.4 million medical students in the world, attending 3,800 medical schools in 186 countries.

Training to become a doctor, depending on the country and specialty can take from 8 years to 15 years of intense education. It represents thousands of hours of classroom, laboratory, and clinical training. We encounter hundreds of patients in clinics.

There is a reality, a harsh reality, that under the present educational standards in medical school, you can become a physician, a Fellowship trained physician, a board certified specialist, a professor, a consultant, an attending, a chairman of the department, the editor of the most prestigious medical journal and even the Dean of a medical school without ever meeting, communicating, or treating a patient with Down syndrome or any patient with a physical, intellectual or behavioral disability. Medical students don’t have the occasion, the opportunity, or the privilege to greet, meet, interact, communicate, understand or care for a patient with Down syndrome and other disabilities. We don’t give medical students the opportunity to interact, engage, converse, or listen – which has been the only way for students to learn about advocacy, empathy and connectivity…the things that are essential for a positive patient provider relationship – and that applies to all patients with and without disabilities. There is currently, for the most part, no formal, required, compulsory or mandated curriculum to put students and patients with disabilities in a space that is as close as the length of the rubber hose of the stethoscope.

The voices of medical education might argue, quote, “there is no time to add any additional courses, class time or clinics, especially for specific small patient populations.”

And to that I would say that’s shortsighted; because beyond the responsibility to ensure that individuals with Down syndrome and other disorders deserve collaborative and comprehensive care across the lifespan……the skills, experience, confidence that students acquire from treating patients with special needs transfer to every patient, every family and every community. In so many ways, patients with Down syndrome are our faculty, our mentors and our instructors.

I’m selfish, it is these students, who have learned to care, have learned to communicate and learned to listen that, when my time has come when I am a patient, one of them will care for me.

I therefore propose that every medical student at every medical school in the world be required to meet and treat individuals with Down syndrome and other conditions. They need to evolve from being sympathetic to being empathic, from being technocratic to being humanistic, from processing patients to embracing patients…. all while applying the latest medical advances, and breakthroughs.

The question arises: How many patients does a physician see in their lifetime?  Mathematically the number is close to 60,000 patient visits but given that 30%would be repeated I would say the number is close to 40,000. The accomplished physician should appreciate that all people when they become a “patient” are vulnerable. They have fears, anxiety, and uncertainties and they, “we”, need compassion, reassurance, and counseling from our physicians, whether we have extra chromosomes or are aging or have an illness or life changing injury. So having “disability competent clinicians” is not a selfish proposal aimed at a small number of beneficiaries – we all win, and how many times can you boast about that as an outcome.

In medicine we have what we call “pearls,” these are nuggets of wisdom, based on our experiences, skills, and outcomes….and we try, at every opportunity to provide them to our medical students.

So, I want to conclude by sharing some of them, in the hopes that medical educators will be diligent in insuring they become part of the hoped for required curriculum.

One, Learn to be an “advocate,” and be one. Advocacy does not have to take place in a politician’s office, or in front of a committee. It can take place, quietly and just between you and the patient that will benefit from your kindness and efforts.

Examine your own personal bias about negative attitudes regarding disabilities. Beware of the soft bigotry of low expectations. Don’t be one of the more than 80% of surveyed physicians who think that people with significant disabilities have worse quality of life than nondisabled people.

Don’t fall prey to diagnostic overshadowing, where the physician attributes all signs and symptoms to the syndrome. The syndrome does not define the person, and your decisions should be made with an understanding that people with Down syndrome are prone to the same circumstances, the same unanticipated curve balls that life often throws at all of us. Be able to distinguish what is because of, and what is a consequence of, and what is unrelated to genetics. Go down whatever rabbit holes you need to see what is treatable, preventable, and curable. There are an estimated 30,000 human diseases…. don’t add neglect, indifference, and injustice to the list…at least not on your watch.

The transformation of global medical education is not a pipe dream.  Mark Twain, the American author was fond of reminding us, “The secret of getting ahead is getting started.”

We have already started. We applaud the efforts of The American Association on Health and Disability, The American Academy of Developmental Medicine and Dentistry, The Institute for Exceptional Care, The Orange Grove Center, the National Council on Disability, The Special Olympics Inclusive Health Initiative, and other international organizations dedicated to the creation, implementation and evaluation of curriculum designed to insure that the next generation of physicians is up to the task of providing competent and compassionate care to individuals with disabilities.

With your support we can get started.