Supreme Court Justice for the Chromosome Rights Movement -- the Next Frontier

Last week, the Supreme Court ruled against chromosome discrimination. Now, citizens with two X chromosomes can marry somebody with two X chromosomes, and those with a Y chromosome can marry other folks with a Y chromosome too.
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Last week, the Supreme Court ruled against chromosome discrimination. Now, citizens with two X chromosomes can marry somebody with two X chromosomes, and those with a Y chromosome can marry other folks with a Y chromosome too.

Undoubtedly, this is a great victory for the Chromosome Rights Movement, but the fight is not over, as other forms of chromosome discrimination are still very prevalent in our society. Today, the nearly 400,000 individuals in the U.S.A. that carry three copies of chromosome 21, a phenomenon known as trisomy 21, are discriminated in myriad ways, from the womb onwards.

Folks with trisomy 21 develop in different ways than people with only two copies of chromosome 21. The presence of the extra chromosome protects them from some ailments while predisposing them to others. For example, it is uncommon for people with trisomy 21 to have solid tumors (think breast, colon and skin cancers). It is also rare for them to display high blood pressure and suffer from heart attacks or strokes.

OK, now for the not so good news. About 40% of babies with trisomy 21 are born with a congenital heart defect that must be repaired with surgery. Many of them develop hearing problems that, if not properly addressed, could impair their learning and development especially in language and communication. Because their respiratory system is shaped somewhat differently, many of them wake up repeatedly at night due to obstructive sleep apnea. Sleep apnea and the deprivation of sleep it causes has various negative long-term effects on their health and it often impairs mood and performance in school.

People with trisomy 21 also have an increased risk of thyroid problems that must be treated with hormones, otherwise their metabolism would derail. Most kids with trisomy 21 have low muscle tone and very flexible joints, which could affect their motor skills if not addressed with specialized physical therapy. Adults with trisomy 21 also have a much higher risk of developing Alzheimer's disease, with about half of them developing dementia in their 40s or 50s.

Despite the fact that all the diseases and ailments mentioned above - congenital heart defects, hearing and vision problems, thyroid dysfunction, sleep apnea, muscle and joint problems, and Alzheimer's disease - affect millions of typical people with only two copies of chromosome 21, folks with trisomy 21 have been historically discriminated against and deemed unworthy of adequate medical care. Or even life.

In 1939, Hitler did a beta test of his mass-murder machinery (called Action T4) by sending thousands of folks with trisomy 21 to the gas chamber, along with other German citizens who were differently-abled or had mental health issues. When the world didn't do a thing, he moved on to commit genocide killing of an estimated six million Jews, as well as millions of others during the Holocaust.

Until not too long ago, the majority of kids with trisomy 21 in the United States were sent to largely inhumane institutions. Deprived of medical care and cruelly neglected by a society that didn't understand them, their life expectancy in the 1980s was only 25 years. With the human and civil rights movement and deinstitutionalization led by President J.F. Kennedy, things have gradually improved for people with trisomy 21. Today, living at home and being allowed access to medical care, more than 40% of them live past the age of 60.

Children with trisomy 21 were also deemed too different to fit in typical schools and remain secluded at home. However, their inclusion into schools demonstrated that they too can fit in, learn and thrive. Today, many teenagers with trisomy 21 graduate from high school with all sort of intellectual, artistic and athletic achievements, and some go on to college.

Another form of discrimination has been the dearth of medical research to understand the various effects of trisomy 21 on human biology. Research funding for trisomy 21 has been dismally low compared to other less common genetic conditions. In fiscal year 2016, funding from the National Institute of Health (NIH) for trisomy 21 was down to $19M. In comparison, the NIH invested $105M on research for multiple sclerosis, which affects about the same number of people as trisomy 21. Accordingly, few scientists do investigations on trisomy 21, preferring instead well-funded areas of biomedical research.

But the times are changing!

The Chromosome Rights Movement is gathering momentum and making great strides in the fight for equal rights for those with an extra chromosome 21. This past weekend, people with trisomy 21 from all around the U.S.A. and more than 30 other countries got together for their 43rd annual convention in Phoenix, Arizona. They shared their stories, learned from physicians and scientists, celebrated their achievements, and danced into the late hours. A few weeks ago, scientists around the world met in France for the first international meeting of the recently created Trisomy 21 Research Society. In Colorado, the first research institute in the U.S.A. fully devoted to the understanding of trisomy 21 continues to grow, supporting 29 different research labs that investigate this condition from the molecular to the clinical level. Supported by a large consortium of grassroots organizations, the NIH recently created a central registry for folks with trisomy 21, which will be invaluable to understand this medical condition. Supported by strong advocacy groups, folks with trisomy 21 have worked with Congress to create a new law that will facilitate their lifestyles. Once segregated to the margins of society, people with trisomy 21 are now going mainstream, appearing in movies, TV shows and glamorous fashion shows.

As the celebrations of the historical Supreme Court ruling on same-sex marriage fade out during the following days, let us remember that the fight for equal rights is a fight for all humanity, regardless of chromosomal content. Now that the LGBT rights movement has secured a strong victory, let's pick up the fight for our hommies with extra chromies.

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