In honor of Down Syndrome Awareness month, I wanted to share a collection of facts and statistics that, I believe, tell a compelling story. Since a large portion of the first part of this blog deals with reproductive health and choice, I will share the disclaimer that I am, in fact, pro-choice. I do have concerns that “true choice” involves being educated on what your choice is. Today, I do not believe that education occurs to a very large degree:
1) About 60% of viable fetuses with DS are diagnosed prenatally, and 92% of them are aborted (55% of the total 60%) – People who find out about their child’s diagnosis before they meet that child chose to terminate
2) That means about 45% are live births – and 89% of them being to parents who receive the diagnosis of DS postnatal. A vast majority of parents of a child with DS was unaware of the diagnosis before birth – and did not “chose” to have a child with DS
3) In spite of not selecting that child, parents who have a child with DS overwhelmingly consider it a positive experience
a. As Dr. Skotko showed – Only 4% regretted having their child
b. As Vanderbilt Kennedy Center showed – Lower divorce rates for parents of children with DS (7.6%) vs. parents of only typical children (10.8%)
c. As Dean Briana Nelson Goff and Director Nicole Springer demonstrated – Early difficulty quickly gives way to a rewarding and richer life
4) The National Society of Genetic Counselors A Guideline for communicating a fetus has DS use the following language:
a. The document states “Central tenet…. requiring the counselor to maintain a neutral stance in order to support and respect the patient’s personal values and decisions.”
b. “Balance” or “Balanced information” is sited 9 times in the document
c. “risk” is used 33 times, “reward” is used 0 times
d. Heart or cardiac defect are mentioned 4 times while low risk of heart attacks or coronary artery disease are not mentioned
e. The document twice brings up questions of how it will “affect the relationship…family unit” but never mentions any of the positive study results demonstrated above
f. In accounting for positives and negatives:
i. Negatives are offered in concrete terms “negative aspects of Down syndrome, such as birth defects, medical complications, and developmental delay,”
ii. Positives are simply partial mitigations of those negatives: “available treatments, therapies, and the ability for people with Down syndrome and their families to enjoy a high quality of life”- and there is no mention of “incremental benefits of having a child with DS vs. a typical child.
g. States children with DS are educated in “a special education classroom. …Inclusion is encouraged whenever possible” in spite of most children today being mainstreamed due to LRE requirements.
5) The American Medical Association also has a document on Prenatal testing and ethics in which it shows a very low value for people with DS:
a. “selection is used for control of …Genetic diseases, including Down’s syndrome…The possibility of selecting…benign genetic traits” – AMA considers DS a disease and malignant
b. “The use of genetic technology to avoid the birth of a child with a genetic disorder is in accordance with the ethical principles associated with a physician’s therapeutic role. However, selection for non-disease-related traits would be inappropriate. Selection practices, such as sex selection, may result in lasting social harms, such as the exacerbation of discrimination, a tendency to view children as products, and eugenics.”
c. “Even when genetic selection is appropriate, it may have some adverse discriminatory consequences….profoundly devaluing message to individuals who have the diseases…..Also the range of genetic diversity…may be limited”
d. “Existing technologies for selection….decisions about …an individual’s worth…on the basis of genetic factors….may constitute extremely dilute but acceptable form of eugenic selection”
e. “Selection to avoid genetic disorders would not always be appropriate…most understandable when the disease would have serious manifestations, such as with…Down syndrome.”
6) According to the NIH website:
– 10-25% of all human conceptions have too many or too few chromosomes –so in fact DS and other aneuploidy are not “abnormal” or “uncommon”, but quite the contrary.
– NIH spent $28M on DS research, or 0.017% of its total budget while DS impacts 1 in 691 births or 0.145% of all births – they spent over 8 times less than if they had allocated funding on a per capita basis – and that assumes every person has a medical difference worth investigating and investing in.
– Of that $28M in funding, over $3M was spent on prenatal testing and other technologies which would help screen out births of people with DS – meaning funding is really 9 times underfunded on a per capita basis (of course in less you intend to reduce the birth rate by 9 times)
– Funding for 2011 and 2012 is estimated to drop to 0.016% of their budget and could make DS research underfunded by 10 times after factoring out prenatal testing research.
7) Crime statistics against people with DS and other cognitive differences:
a. The DOJ states that violent crime rate and sexual assault rate for people with cognitive disabilities is 2 times that of a typical person.
b. The Colorado Department of Public Health estimates that at least 85% of women with disabilities are victims of domestic violence compared to 25 to 50% of non-disabled women.
c. It has been estimated that 83% of women with a disability will be sexually assaulted in their lifetime.
8) Some awesome facts about Down syndrome:
a. Improvements in the Medical Community
i. Lettercase.org distributed 10k booklets “Understanding a Down syndrome diagnosis” to medical professionals in the last year in order to to better-educate them.
ii. Doctors such as Dr. Stotko (A Harvard graduate who has a sister with DS) and Dr. Mobley (A UC San Diego and Stanford Neurology Department Chair and Professor) continue to push for greater awareness, understanding, and research in the medical community.
b. Improvements in Medical Research and Practice
i. Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
ii. People with DS rarely get hard tumors, have heart attacks or coronary artery disease while having a higher prevalence of high cholesterol, diabetes, and Alzheimer’s – offer to teach us some of the secrets behind some of the most expensive medical conditions of our times.
iii. Amazingly, according to Science Daily, Dr. Huntington Potter has proven that Alzheimer’s and Down syndrome are in-fact the same thing – with all people with Alzheimer’s having trisomy 21 in some cells in their body
iv. Roche has just begun clinical trials for a drug that may ameliorate some of the cognitive issues associated with DS allowing the population to lead more productive and independent lives. Dr. Mobley has stated there are 3-4 other potential candidate compounds being considered by other large medical companies.
v. In September the NIH just formed a DS consortium which should improve focus on DS research.
vi. Researchers have demonstrated that people with DS use different parts of their brain for speech comprehension and action – thus explaining some of their learning differences and why they are gifted visual learners.
vii. There are currently two bills before congress that are being proposed to increase research and create centers of excellence for DS research – funding greater research results. I am proud to say my Representative Gallegly has agreed to sponsor the bill at my urging.
c. Improvements in treatment of the DS community
i. Since the passage of The Individuals with Disabilities Education Act (IDEA 35 years ago, people with DS are very often included in mainstream classrooms with typical peers.
ii. Improvements in care over the past 15 years have led to a 20-point increase in IQ for individuals with Down syndrome.
iii. Recognizing the power of language over thought, and at the request of self-advocates, the Special Olympics launched a campaign to end the “R-Word” in March of 2009
iv. The derogatory r-word (retarded) has been eliminated from the Federal Government lexicon by Rose’s Law in 2010 – named after a girl with DS in Massachusetts who was unwilling to have that label applied by their school – Several states including Hawaii and Massachusettes have also banned the word.
v. After having a child with DS in 2007, Congresswoman Cathy McMorris Rodgers formed the DS caucus – a bipartisan group of four congress people who are working to improve awareness, educational, employment and research opportunities for the DS community.
There is plenty more to share, but this is a ton to digest. It is because of these collection of facts that I have become an accidental advocate, in spite of general preference for anonymity (hey, I’m a middle child – anonymity is how I made my living). I hope you enjoyed and feel free to share any ones you feel should be added!