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Choosing the day that I die

Choosing the day that I die

In the end, it wasn’t easy for Aaron McQ to decide when to die.

The 50-year-old – a former world traveler, triathlete and cyclist – learned he had leukaemia five years ago, followed by an even grimmer diagnosis in 2016: a rare form of amyotrophic lateral sclerosis, or ALS.

An interior and urban designer in Seattle, United States, who legally changed his given name, McQ had been in pain and physical decline for years.

Then the disease threatened to shut down his ability to swallow and breathe. “It’s like waking up every morning in quicksand,” he said. “It’s terrifying.”

In the fall of 2017, McQ decided to use Washington state’s 2009 Death With Dignity law to end his suffering.

The practice, approved in seven American states and the District of Columbia, allows people with a projected six months or less to live to obtain lethal drugs to end their lives.

Although the option was legal, actually carrying it out was difficult for McQ, who agreed to discuss his deliberations with Kaiser Health News. He said he hoped to shed light on an often secretive and misunderstood practice.

“How does anyone get their head around dying?” he said, sitting in a wheelchair in his Seattle apartment in late January 2018.

More than 3,000 people in the US have chosen such deaths since Oregon’s law was enacted in 1997, according to state reports.

Even as similar statutes have expanded to more venues – including, this year, Hawaii – it has remained controversial.

California’s End of Life Option Act, which took effect in 2016, was suspended for three weeks this spring after a court challenge, leaving hundreds of dying patients briefly in limbo.

Supporters say the practice gives patients control over their own fate in the face of a terminal illness.

Detractors – including religious groups, disability rights advocates and some doctors – argue that such laws could put pressure on vulnerable people and that proper palliative care can ease end-of-life suffering.

Thin and wan, with silver hair and piercing blue eyes, McQ still could have passed for the photographer’s model he once was.

But his legs shook involuntarily beneath his dark jeans and his voice was hoarse with pain during a three-hour effort to tell his story.

In November 2017, doctors told McQ he had six months or less to live. The choice, he said, became not death over a healthy life, but a “certain outcome” now over a prolonged, painful – and “unknowable” – end.

“I’m not wanting to die,” he said. “I’m very much alive, yet I’m suffering. And I would rather have it not be a surprise.”

In late December 2017, a friend picked up a prescription for 100 tablets of the powerful sedative secobarbital. For weeks, the bottle holding the lethal dose sat on a shelf in his kitchen.

“I was not relaxed or confident until I had it in my cupboard,” McQ said.

At the time, he intended to take the drug in late February 2018. Or maybe mid-March. He had wanted to get past Christmas so that he didn’t ruin anyone’s holiday.

Then his sister and her family came for a visit. Then there was a friend’s birthday and another friend’s wedding.

“No one is ever really ready to die,” he said. “There will always be a reason not to.”

Aaron McQ, euthanasia, assisted death, aid-in-dying, ALS, Star2.com

In late December 2017, a friend picked up McQ’s prescription for 100 tablets of secobarbital. For weeks, the bottle holding the lethal dose sat on a shelf in his kitchen.

Many people who opt for medical aid-in-dying are so sick that they take the drugs as soon as they can, impatiently enduring state-mandated waiting periods to obtain the prescriptions.

Data from Oregon show that the median time from first request to death is 48 days, or about seven weeks. But it has ranged from two weeks to more than 2.7 years, records show.

Neurodegenerative diseases like ALS are particularly difficult, said Dr Lonny Shavelson, a Berkeley, California, physician who has supervised nearly 90 aid-in-dying deaths in that state and advised more than 600 patients since 2016.

“It’s a very complicated decision week to week,” he said. “How do you decide? When do you decide? We don’t let them make that decision alone.”

Philosophically, McQ had been a supporter of aid-in-dying for years. He was the final caregiver for his grandmother, Milly, who, he said, begged for death to end pain at the end of her life.

By late spring 2018, his own struggle was worse, said Karen Robinson, his healthcare proxy and friend of two decades. He was admitted to home hospice care, but continued to decline.

When a nurse recommended that he transfer to a hospice facility to control his growing pain, he decided he’d rather die at home.

“There was part of him that was hoping there were some other alternative,” Robinson said.

McQ considered several dates – and then changed his mind, partly because of the pressure that such a choice imposed. “I don’t want to talk about it because I don’t want to feel like, now you gotta,” he said.

Along with the pain, the risk of losing the physical ability to administer the medication himself, a legal requirement, was growing.

“I talked with him about losing his window of opportunity,” said Gretchen DeRoche, a volunteer with the group End of Life Washington, who said she has supervised hundreds of aid-in-dying deaths.

Finally, McQ chose the day: April 10, 2018. Robinson came over early in the afternoon, as she had often done, to drink coffee and talk – but not about his impending death.

“There was a part of him that didn’t want it to be like this is the day,” she said.

DeRoche arrived exactly at 5:30pm, per McQ’s instructions. At 6pm, McQ took anti-nausea medication. Because the lethal drugs are so bitter, there is some chance patients won’t keep them down.

Four close friends gathered, along with Robinson. They sorted through McQ’s CDs, trying to find appropriate music.

“He put on Marianne Faithfull. She’s amazing, but it was too much,” Robinson said.

“Then he put on James Taylor for like, 15 seconds. It was You’ve Got a Friend. I vetoed that. I said, ‘Aaron, you cannot do that if you want us to hold it together.’”

DeRoche went into a bedroom to open the 100 capsules of 100mg secobarbital, one at a time, a tedious process. Then she mixed the drug with coconut water and some vodka.

Just then, McQ started to cry, DeRoche said. “I think he was just kind of mourning the loss of the life he had expected to live.”

After that, he said he was ready. he asked everyone but DeRoche to leave the room. She told him he could still change his mind.

“I said, as I do to everyone: ‘If you take this medication, you’re going to go to sleep and you are not going to wake up,’” she recalled.

McQ drank half the drug mixture, paused and drank water. Then he swallowed the rest.

His friends returned, but remained silent. “They just all gathered around him, each one touching him,” DeRoche said.

Very quickly, just before 7:30pm, it was over.

“It was just like one fluid motion,” DeRoche said. “He drank the medication, he went to sleep and he died in six minutes. I think we were all a little surprised he was gone that fast.”

The friends stayed until a funeral home worker arrived.

“Once we got him into the vehicle, she asked, ‘What kind of music does he like?’” Robinson recalled. “It was just such a sweet, human thing for her to say. He was driving away, listening to jazz.”

McQ’s friends gathered June 30, 2018, in Seattle for a “happy memories celebration” of his life, Robinson said.

She and a few others kayaked out into Lake Washington and left his ashes in the water, along with rose petals.

In the months since her friend’s death, Robinson has reflected on McQ’s decision to die. It was probably what he expected, she said, but not anything that he desired.

“It’s really tough to be alive and then not be alive because of your choice,” she said. “If he had his wish, he would have died in his sleep.” – Kaiser Health News/Tribune News Service

Meet the 29-year-old who founded a company that’s using technology to find treatments for diseases thought to be incurable

Meet the 29-year-old who founded a company that’s using technology to find treatments for diseases thought to be incurable

Alice Zhang, co-founder and CEO of drug discovery company Verge Genomics

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Alice Zhang, co-founder and CEO of drug discovery company Verge Genomics
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Verge Genomics
  • Alice Zhang started Verge Genomics in 2015 with Jason Chen to combine innovation in neuroscience, machine learning and genomics and apply it to the drug discovery process.
  • The vision for Verge was to become the first pharmaceutical company that automated its drug discovery engine, helping to rapidly develop multiple lifesaving treatments in diseases like Alzheimer’s disease, ALS, and Parkinson’s disease where no cure exists today.
  • On Monday, the San Francisco-based company announced it had raised $32 million in series A funding, led by Draper Fischer Jurvetson, bringing its total amount raised to $36.5 million.

The drug development process is laden with problems that make it lengthy and expensive. Right now, it takes 12 years and $2.6 billion to get a single drug to market, with the drug discovery and development process costing $1.4 billion.

Verge Genomics, run by 29-year-old Alice Zhang, is trying to address these problems by making drug discovery faster and cheaper.

On Monday, the San Francisco-based company announced it had raised $32 million in series A funding, led by Draper Fischer Jurvetson, bringing its total amount raised to $36.5 million.

Zhang was three months shy of her MD and PhD graduation from University of California-Los Angeles when she left school to start Verge Genomics in 2015 with Jason Chen, who she met during the program.

“I just became very frustrated with the drug discovery process,” she said. “It’s largely a guessing game where companies are essentially brute force screening millions of drugs just to stumble across a single new drug that works.”

At the time, Zhang also recognized the advancements in neuroscience, machine learning and genomics occurring all around her. Genome sequencing had become more and more affordable, and breakthroughs in understanding how function connects with genes opened a new field of possibilities for exploring disease and health. And there was an opening for an opportunity to guesswork out of drug discovery. The vision for Verge was to become the first pharmaceutical company that automated its drug discovery engine, helping to rapidly develop multiple lifesaving treatments in diseases like Alzheimer’s disease, ALS, and Parkinson’s disease where no cure exists today.

Recently, other big pharmaceutical agencies like Novartis are also starting to follow suit, adapting technology to different steps of the clinical trial process.

Verge, 14 people large, functions at full capacity. Not only do they have computer scientists managing the front-end of machine learning, but they also have researchers working in its own in-house drug discovery and animal lab.The team is stacked with computer scientists, mathematicians, neurobiologists, as well as industry veterans and drug development veterans.

There are three main problems in drug discovery that Verge is using data and software to tackle. The first is that many diseases like Alzheimer’s disease are caused by hundreds of genes. Verge’s algorithms on human genomic data can map these genes out. The second is instead of using animal data only for pre-clinical trials, Verge uses human data from day one, which may enable greater insight into how effective the drug actually is on human cells. Drugs that work in mice often fail in humans, and that’s because they’re usually there to serve as primary mammal model. Instead of tediously screening millions of drugs, the algorithm will computationally predict drugs that work.

Verge uses brain samples from patients that have passed away from Alzheimer’s disease or Parkinson’s disease for its human data, obtained through partnerships with over a dozen different universities, hospitals and brain banks. The company then RNA-sequences them in-house, which allows them to measure the gene expression in its most current state, and it can measure simultaneously how all of the genes in the genome are behaving. This data helps scientists figure out what’s actually causing disease in these patients and see if there are connections between genes and disease.

Verge’s scientists can make predictions about what drugs they think will work. They can take a patient’s own skin cell and turn it directly into their own brain cells in a dish. Then the predictions can be tested on these brain cells to see if they can rescue them from dysfunction or death – a basic test of drug efficacy. That validation data can feed back into the platform and continuously improve predictions over time, even across different diseases.

The Verge algorithm identifies drugable targets for treatments, then design drugs accordingly. This is done by mining through human samples to identify groups of genes that are implicated with the disease, and what crucial hub in these gene networks can turn them on or off.

The latest investment in Verge will serve to advance its ALS and Parkinson’s disease drugs. There are six drugs in development, closer to the clinical end, which are being tested to make sure they’re safe and non-toxic. The funding will also be used to expand the number of diseases Verge has in its portfolio.

Emily Melton, a partner at DFJ, told Business Insider that investment in early stage startups is largely about the team, the uniqueness of the idea and the capability and expertise of the research team. But what drew her in most was Zhang. “She was this brilliant founder, with a very organic desire to create an impact,” said Melton. “She felt like it was her calling.”

Using system learning to recognize patterns that would otherwise go undetected by the human eye can speed up the process while creating a bigger and better feedback loop, said Melton. “We’re rethinking how drug discovery is done, and we’re rethinking how therapeutics are developed.”

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