For the last decade, America has been having a deep discussion with itself over healthcare. It costs too much. Not enough people are covered. Bad diet and a lack of exercise are the cause of our most serious chronic diseases, such as diabetes and heart diseases. The pharmaceutical system is corrupt and has been artificially raising drug prices, killing Americans who cannot afford their prescriptions. At the same time, big pharma conspired to oversell painkillers, addicting 1.7 million Americans and killing 50,000 every year.
Those are just a few of the crises that are regularly in the headlines! Many problems are systemically under-reported. That doesn’t mean that there is a conspiracy to hide these problems, they are just unpopular, or haven’t found the right form of support, or started small and grew slowly, or even began as separate issues and were later found to be one *b*i*g* issue. The most stunning example of this is Intellectual and Developmental Disabilities or IDD.
A wide range of disorders falls under the single heading of IDD. Everyone knows Autism. Cerebral Palsy and Down’s Syndrome… sure. Traumatic Brain Injury? Does it sound a bit familiar? TSC? Maybe not? Fragile X, Prader-Willi Syndrome, Fetal alcohol spectrum disorder, and even less well-known disabilities? Not likely.
Let’s consider just one example. Autism. This is probably the most well-known form of IDD. It was just beginning to be recognized as an important disorder in the 1970s and 1980s. Back then 1 in 2000 children were detected with the disorder. Move ahead a few years to 2004, and it rose to 1 in 150. By 2018 it was 1 in 59, and the numbers are still rising. Other IDD disorders are similar increases have occurred. How did this quiet little epidemic happen?
We’re Getting Better: The most common answer from the medical field is that our healthcare system has become better at identifying Autism and other forms of IDD. That’s probably true. Every process and technology in healthcare is better than it was a few decades ago. Including diagnosis. But how much of the rise in IDD is from better diagnosis and tracking? Almost no one has a good answer for that. Unfortunately, when there is a flaw in how you track numbers, it’s very difficult to go back and make corrections. Still, this is just one probable source of our rising numbers.
Reproduction Technology: This is an area of dramatic healthcare improvement. Once, couples that could not have children of their own had virtually no options. Today, Assisted Reproductive Technology (ART) is a $5.8 billion industry, that is responsible for the birth of over 50,000 babies per year. That was great news for parents. But soon, it led to a new problem.
ART is expensive! Under the best circumstances, there is only a 50% chance that a single attempt will be successful. Instead, many families must try over and over again. On average, ART costs families $50,000, which is far more than many families have. When families run out of money, their next attempt will be their last. Compromises that were unacceptable at the start of this process, may now be acceptable. Imperfect embryos (Aneuploid) may be implanted and brought to term. With nearly 500 fertility clinics and 1,700 reproductive endocrinologists, a family that is about to fun out of money can shop around for a doctor that is willing to work with an egg that has significant genetic issues.
Similarly, improvements during the pregnancy and in the operating room allows for live births that would not have lived to term in the past. Many of these improvements are not in reproduction specific areas. Medical equipment is better, computers provide doctors with more data, new drugs ensure the health of the mother and unborn child, and so on. Due to these improvements, births that would not have occurred in the past, now come to term. Including births that may result in IDD.
Parent Age: Another result of better healthcare is that we all live longer. A century ago, families often had children in their teens. Now we have more time, allowing families to have children later in life. By the 1970s, first-time mothers were in their early 20’s. Today, the average is 26 and rising. First-time Dads are even older, averaging 31. More than 9% of mothers have a child after age 35. The older the parent, the greater the risk of birth defects, and life-long disability. Including IDD.
The chance of having a Down syndrome birth has long been known to be associated with the age of the mother. Compared to a 20-year-old mother, a 40-year-old mother has 20 times the chance of a Downs syndrome birth. At 49, it is 200 times higher. Through ART, the age of the oldest woman to successfully give birth is 74. While there is less research on the age of the father, the father’s age also matters.
Down’s syndrome is caused by a missing or damaged 21st chromosome. Given that Down’s syndrome is routinely tested for during pregnancy, the 30% rise in Down’s syndrome births strongly indicates a choice. Autism, however, involves hundreds of genes. We don’t understand how and these genes interact and create specific autistic characteristics. A mere review of our genes won’t tell us enough (at least not yet). Instead, we must wait until the child has grown up enough for us to observe their behavior.
IDD Lifespan: In the last century our lives have grown longer by decades. IDD children have benefited even more from improved healthcare. Not that long ago, few of these children lived long enough to become adults. A Down’s syndrome baby born in 1970 only lived for an average of 10 years. That same child today will live until 50. Yes, more IDD births have increased the population. But the increase in life expectancy is even more important in understanding the rise in this population.
An enormous service gap is opening up for IDD adults. Traditionally, IDD services were largely targeted at children. These services focus on basic education and basic skills. But when that child becomes an adult, those adults need jobs… and housing. Therapies are needed to keep up their skills and specialized medical care is needed for intestinal disorders, depression & anxiety, behavioral problems that are so common for adults with IDD. Medical science is also discovering links between Autism and Alzheimers. There are many indicators that when IDD adults become IDD seniors, they will have much higher incidents of Alzheimer’s and other forms of senility. Appropriate facilities and services are barely even being contemplated today.
Traumatic Brain Injury (TBI): A sharp blow to the head can result in unconsciousness or even a coma. You could recover immediately and appear to be just fine. Months or even years later, you may experience memory loss, intellectual impairment, or early signs of dementia. Is it the TBI? Is it genetics? Or could it be something else?
We know a great deal about TBI, in part because of sports. We’ve long known that professional boxers suffer from brain damage due to repeated TBIs. Today we know that up to 90% of boxers suffer from brain damage. More recently, questions have been raised about injuries from football. Unfortunately, the NFL put profits ahead of the lives of their players and was suppressing medical information about the extent of these injuries. Similar revelations have been revealed in professional wrestling, hockey, high school, and college sports. Aggression in these sports (and the average size of the players) has risen, the number of potential TBIs has also been on the rise.
Since 2003, America soldiers have seen nearly continuous military action. The Department of Defense (DOD) estimates that 22 percent of all combat casualties from Iraq and Afghanistan are brain injuries. Soldiers that are at the highest risk of injury are the youngest, 18-24 years old. Improvements in medicine give soldiers a much better chance of surviving a serious battlefield injury.
The war in Iraq lasted twice as long as Vietnam and involved even more personnel. Yet, there were 75,000 casualties in Vietnam, compared to just 4,000 in Iraq and Afghanistan combined. Improvements in medicine is a good thing. Lives have been saved. But what happens to these soldiers a decade or later when signs of disability begin to manifest?
If you’re not in the military or on a sports team, TBI would still be important to you and your family. Over 2.5 million TBI’s occur in America every year. Traffic accidents, a fall, an accident at work… life is filled with opportunities for head trauma. Lifestyle changes, such as the growing tendency to text while driving, have been driving up the number of traffic accidents since the arrival of the iPhone.
Now What?: America’s healthcare system needs to adjust to these new demographics. Intellectual disability is no longer limited to just the young. More children are born with IDD, more incidents happen in life that will cause brain trauma that negatively impacts intellectual capacity, and longer lives mean that the majority of IDD individuals are now adults and will soon be seniors.
The cost of supporting an autistic or IDD child is much less than that of a child. A child needs education, but an adult also needs education… plus a job and a home. As that child continues to age, a once robust child may succumb to the related illnesses of the IDD world. Anxiety, depression, osteoporosis, gut diseases, and a host of other illnesses. Soon this population will also succumb to early-onset Alzheimers, progressive dementia, and all of the other well-known disabilities of old age… but at a much earlier age.
Even today, there are few services that are able to deal with this combination of issues. In the future, this gap will continue to grow. What do you think? Should this hidden disability crisis become a priority for America’s health care system? Tell us what you think!