Agree with her or not, Ruth Bader Ginsburg, fondly known by her “rock star” status as RBG, was a giant in the world of justice and law.  Even keeled and unmovable in her ideals, she served on the Supreme Court for 27 years. Attempting to sum up this woman is like trying to put a genie back in the bottle.  It’s impossible, because her life was multi-dimensional, and just when I thought I knew everything there is to know about her, I discovered more.

RBG was born in Brooklyn at a time when women’s lives were predetermined between marriage, motherhood, or secretary.  No matter how many women attended university or colleges, they could never put their foot in the door let alone enter the room. But RBG broke the mold on timidity and challenged everyone and everything that stood in her way.  According to biographers and interviewers, RBG gave credit to her mother for inheriting tenacity genes. Unfortunately, Ruth’s mother died the day before Ruth graduated from High School.

Ruth’s determination toward success started at 17, when she received a full scholarship to Cornell University. There she met her soon-to-be husband, Marty.  He fell in love with her because “she had a brain”. When Marty joined the service they moved to Fort Sill, Oklahoma.  Ruth took the civil service exam, but her high scores were irrelevant and she could only get a job as a typist.  When she got pregnant, true to form, she lost her job.

Two years later, both she and her husband returned to the East Coast and were admitted to Harvard Law School.  It was tough for the nine women who were “accepted” amid 500 men.  At one time, the Dean asked Ruth why she would allow herself to take a place that “should go to a man”.  This gave Ruth the incentive to become an academic star.  She outpaced her husband.

Juggling law school, a toddler, and a household; Ruth took on life with a vengeance.  When Marty was diagnosed with testicular cancer, Ruth became his caregiver; he dictated his law assignments which she typed well into the night.  After which she would start with her own studies. In a 1993 interview, Marty marveled at his wife who had taken care of a three year-old, a sick husband, and attended classes.  Marty survived the cancer and graduated.  When he got a job in New York City, Ruth transferred to Columbia University Law School, where she managed to graduate top of her class.

But being a woman lawyer did not exactly open doors to employment opportunities.  Although recommended for Supreme Court Clerk, she was not even interviewed.  In an all male judge pool, females, especially married ones were not welcomed. They were presumed distracted by family obligations. But Ruth had a mentor and law professor who believed in her ability to achieve.  Gerald Gunther was renowned in finding the best court clerks for judges.  One particular judge was Judge Palmieri. Palmieri demanded the best, and Gerald sent him Ruth, with the proviso that if he didn’t give her a chance he would not send Palmieri any future clerks.  The bait was taken, and Ruth clerked with Palmieri for two years.

RBG was a prolific woman who found ways that would enhance either her work or her life.  She went through lengths to accomplish a project or an opportunity. When at Columbia, she learned Swedish.  She wanted to work with Anders Bruzelius, a Swedish Civil Procedure Scholar who was writing a book through the Columbia University School of Law Project on International procedure. RBG ended up co-authoring the book.

In 1963, RBG landed a teaching job at Rutgers Law School.  She was also pregnant with her second child.  Knowing full well that she would be fired, she hid her “bump” under her mother-in-law’s clothes.  She landed a second contract with the school before the baby was born. It was at Rutgers that Ruth started her gender discrimination crusade.

Her first big case she nicknamed “The Mother Brief”. At that time the IRS only recognized women’s claims for tax deduction for taking care of elderly family members; widowed men, or divorced individuals were disqualified. A Colorado man, Charles Moritz, had been caring for his 89 year-old mother without eligibility for tax deductions because of his single male status. The Internal Revenue Code stated that Charles’ status was immune to Constitutional challenge, at which Ruth replied “preposterous”.  She teamed up with her husband and they tackled the case on both fronts. Her husband took on the tax perspective while Ruth took on the Constitutional aspect of the case. The case was won in lower courts by asking the courts not to invalidate the statute but to apply it equally for both sexes. Eventually the government petitioned the US Supreme Court on the unconstitutionality of hundreds of federal statutes.  For the next 10 years, Ruth litigated all of them.

In 1971, she delivered her first Supreme Court brief in Reed v Reed. Ruth represented Sally Reed who was asking to be the executor of her son’s estate.  Once again the law automatically discriminated against women executors giving the right automatically to Sally’s ex-husband. Ruth litigated on the constitutionality of a State that automatically prefers men over women as executors of an estate. The Supreme Court ruled in Ruth’s favor and struck down the law as discriminatory toward women.

Ruth became the first tenured professor at Columbia University. She founded the Women’s Rights Project at the American Civil Liberties Union (ACLU). Her object in life was winning women’s rights. She knew that she had to approach her ideals by persuading men that equality was a fundamental right for everybody. She took on cases with male plaintiffs to demonstrate that discrimination against women can often harm men. In Weinberger v Wiesenfeld, Ruth represented a man whose wife had died in childbirth.  She had been the sole breadwinner. Her husband was seeking survivor’s benefits to raise his son.  But existing Social Security laws did not recognize widowers as eligible survivors, only widows. She litigated that absolute exclusion against female workers harmed their spouses and their children. The Supreme Court agreed.  Throughout her career and litigations, Ruth argued that the 14th Amendment was not only about race and ethnicity, but also about women.

In 1980, President Jimmy Carter appointed RBG to the US Courts of Appeal for the District of Columbia Circuit. In 1993, President Bill Clinton nominated her to the Supreme Court. She was not his first choice. He was being pressured by women activists who were critical of her stand on abortion.  She had publicly criticized the legality of Roe v Wade. A small fact that is conveniently ignored. She was confirmed in an overwhelming vote of 96-3.  She became the second woman on the Supreme Court next to Sandra Day O’Connor.

Although small and demure, RBG had an appetite for life that astonished those around her.  She rode horses and parasailed into her 70’s. Her closest friend was Judge Antonin Scalia, her conservative counterpart who passed away in 2016.  Their unusual friendship spawned an Opera, Scalia/Ginsburg based on their legal disagreements and ultimate affection for one another.  They both had brilliant minds and their strong friendship was sustained through their respect for each other.

Over the years she rose to the Supreme Court seniority, but her passion was and remained; women’s rights. Her soft demeanor but sharp wit and mind won over conservative judges to her side especially in important cases.  Such a case was the 2015 court’s decision to uphold independent redistricting commissions established by voter referendum. This was aimed at removing partisanship legislative district lines.

In Burwell v Hobby Lobby, Ruth gave the dissent on for-profit companies’ non compliance with the mandate that they provide contraception as part of their employees’ health plan.  Hobby Lobby fought the case under “religious grounds”.  She based her argument on their argument.  How far can “religious grounds” go? Can an employer deny equal pay or minimum wage under a religious claim? It was this unrelenting tenacity that won her the respect of her fellow judges on both side of the aisle.

Starting in 1999, Ruth fought with colon cancer, pancreatic cancer, lung cancer, and liver lesions.  Yet through it all she never shirked her job or gave less of her life. In 2009, just three weeks after a major pancreatic cancer surgery, she sat at the State of the Union address.  When her husband died, she was back on the bench the next day. He left her a letter of encouragement before he died. Years later she admitted that she had gone to work “for him”.  He would have wanted her to.

Chief Justice John Roberts described her as a “tireless and resolute champion of justice”. Ruth Bader Ginsburg was a revolutionary. In 1996, she took on the Virginia Military Institute for not allowing women cadets to apply. Her scathing remarks were to the point; “rigorous training should not ban women from the same opportunities”.

RBG had a sense of humor and found it easy to laugh at herself.  During the 2015 State of the Union address she was caught napping on camera.  She admitted that she had succumbed to wine at dinner which relaxed her. She also admitted that she was not entirely a “sober judge”.

Ruth Bader Ginsburg will always be remembered for her razor sharp mind. But she will also be remembered for her unabashed belief in women’s rights. Her arguments and dissents albeit fraught with judicial verbiage that most of us don’t understand, asked one scathing question: Why not? Why can’t a woman be that or do that? I can’t say that I have always agreed with her dissents, but I respected the arguments and passion behind them.  She fought for those who were systematically and legally excluded from opportunities on basis of gender. She fought for us. RBG was genuine. Judge Thomas summed her up succinctly: she was the “essence of grace, civility and dignity”. Rest in Peace RBG. Aleha ha-Shalom.

There is nothing worse than watching a dear friend wait for the inevitable; the slow process toward terminality. I have such a friend. A dear friend. Once active and energetic, he is now at the mercy of Amyotrophic Lateral Sclerosis; better known as Lou Gehrig’s disease or ALS. The disease that creeps through one’s body insidiously and painfully.  Like thousands of ALS patients, my friend is patiently waiting for reprieve. He and others like him are at the mercy of the FDA.

Until recently, I had never met anyone with ALS or knew much about it. But watching my friend’s silent endurance compelled me to educate myself, and hopefully others. ALS raises its head slowly and often undetected until too late.  Twitching, slurring of speech, and weakness in the muscles are often the first signs of the deadly disease. Eventually, all muscle movement, speech, breathing, and food intake becomes difficult, painful, and ultimately fatal. The domino effect of nerve cell deterioration gradually breaks down motor neurons in the body.  These are the cells that control voluntary muscle movements like walking and talking.  Because motor neuron cells extend from our brain to our spinal cord, when damaged,  they stop sending “messages” to our muscles that give movement commands. There is no medical magical formula that determines the rate of deterioration.

A few years ago we all remember the “ice bucket” challenge that was supposed to raise money and awareness for ALS patients.  $115 million were raised for alleged research.  ALS patients have yet to realize any benefit from the fund raiser.  They have been waiting in earnest for the promised research to materialize.  Time is not on any ALS patient’s side. Unlike other diseases, ALS can morph into terminal at a blink of an eye.  ALS patients do not have the luxury of waiting. The frustration is not with drug or research firms, but with the FDA. 

For a long time, drugs and treatments slowed the deterioration down rather than reversing it; until now.  A small Israeli firm, Brainstorm Cell Therapeutics has developed and is testing a new drug and process called NurOwn.  What is different and giving hope to the millions afflicted by ALS, are NurOwn’s results.  Unlike other drugs and treatments that only slowed down or stopped (often just temporarily) the deteriorating process, NurOwn has the capability of complete reversal. The process is in its third phase, which means it has already been tested on humans.  If the NurOwn induced ALS process is successful, it can also treat other neurodegenerative disease like Parkinson’s and multiple sclerosis. 

NurOwn uses cell stem technology. Bone marrow cells are extracted from the patient, matured, and injected back to rebuild deteriorated brain cell blocks. During maturation, the bone marrow cells are manipulated into behaving like normal brain cells.  Once injected back, they circulate in the spinal fluid and back into the brain repairing it.  A reverse process to the initial onset of the disease. 

The Right to Try Act was passed in 2018, allegedly giving terminally ill patients access to experimental treatments.  ALS patients have been asking the FDA to fast track the Brainstorm treatment the same way they had done with AIDS. Phase three of testing is in progress and awaiting conclusion if it weren’t for COVID.  We have stopped research and treatments for terminal diseases in lieu of finding a vaccine for a virus which people are recovering from. Despite the number of COVID cases reported, the majority of them recover.  You don’t hear that on cable news networks. But like AIDS in the 80’s, COVID is now an election campaign issue elevated to unprecedented political heights at the expense of terminal diseases.

We are into the 11th year of NurOwn’s research, but the FDA drags its feet holding bio-pharma companies responsible to outdated strict regulations while at the same time asking them to foot the bill.  It takes approximately 12 years and billions of dollars between the creation of a drug in the lab and approval by the FDA.  The FDA requires continual testing; often on terminal ill patients waiting for a cure.  Some patients fight the US Government for the right to be tested. But in many cases and unbeknownst to them, they are given placebos. Small companies like Brainstorm cannot afford to make the drug available to the general public and insurers unless the FDA approves it.  Right now, NurOwn’s one-time treatment is a five figure amount. The treatment needs to be repeated. The average life expectancy of an ALS patient is three to four years. Do the math.

When a government organization like the FDA plays politics, people die.  When the FDA picks and chooses who has life priority, it becomes irrelevant. Why should approval of a much needed drug or treatment take so long, especially when it has already been tested? The FDA claims that there are already drugs dealing with ALS. Unfortunately for ALS patients, their disease does not have biomarkers.  Cancer research looks for a tumor, a measurable end point which gives researchers a reference toward a cure.  ALS does not have a rating scale.  One either gets better or not.  No two individuals can be measured equally across the board.  That is why NurOwn is different. It is individualistic through the patient’s own stem cell recovery.  It is unique to each patient.

Some politicians did step up to the plate and written to FDA commissioner asking for  parallel research track to be given to ALS as it was given to the AIDS epidemic in the 80’s. Senators Ted Cruz, Marco Rubio, Mike Braun, and Mike Lee are putting pressure on the FDA to give ALS patients access to NurOwn research under the Right to Try Act.  In the meantime, my friend is among the 5,000 who are annually diagnosed with ALS. He is also one of the many waiting for the FDA to get its finger out and help him. According to the FDA, the reason that ALS testing takes so long is because the number of people afflicted with the disease is not large enough to get a good sample.  How encouraging. Tell that to the 20,000 or so Americans known to have the disease, the 5,000 more who will be afflicted by it, and the thousands that have already died.

Like any degenerative disease, the pain and suffering does not belong only to the patient, but also to his family.  Spouses, children, and friends stand by and watch with agony as their loved ones recede into another world of immobility. Their lives stand still between doing all they can to ease discomfort and pain, and a distant hope of recovery through a new drug discovery.  In this case, there is a new drug discovery that could bring relief to my friend, his family, and the thousands waiting patiently in immobilizing pain. 

There are the Naysayers who want more tests and research into NurOwn, but they are not afflicted by the disease.  As one spouse of an ALS patient so aptly put it:” Quite frankly, when I hear people express that is might be risky or dangerous, an ALS patient such as my wife could care less!  How many ALS patients will die in the next year waiting for a possible effective treatment?” 

The FDA has three objectives; reputation, lobbying, and politics. It protects its reputation first, then aligns itself to profitable lobbyists, and finally turns its attention to the politics of the moment. COVID is the politics of the current moment, just as AIDS was in the 80’s. Media coverage does not help either.  The media sways toward the political agenda of their choice. The FDA follows suit.

The FDA weighs reputation, politics, and lobbying against its decision to approve a drug.  Its reputation as guardian of public health, has done very little for ALS patients. It’s politics have done even less. The FDA’s strong bureaucratic autonomy operates at the expense of terminal patients and drug availability that can save lives. NurOwn is caught in this vicious bureaucratic triangle at the expense of my friend. Wrong does not start to describe it.