The rise of the 21st century ‘bioquacks’
Bioindustry chiefs claim social media has given charlatans global reach, reports Margi Murphy
One unpleasant symptom of the web is that “quacks”, once confined to travelling on horseback to different villages, have a global platform to market their bogus cures. A particularly chilling example culminated in the death of Aaron Traywick, the Ascendance start-up founder who was found in a flotation tank in Washington, US.
Ascendance, a biohacking company, made headlines for its plans to bring cheap remedies to the general public.
Biohacking is a rebranding of gene therapy that aligns itself with the principles of Tesla’s Elon Musk and Facebook’s Mark Zuckerberg – garage hackers who fail fast and break the rules.
The start-up mantra could be perceived as a welcome change. After all, it takes an estimated seven years, 10,000 patients and more than $1bn (£0.7bn) to develop a successful drug.
Regulation and funding for experimental gene therapies are even trickier. The emergence of cheap gene editing kits that can be bought online offered hope, but now appear to have the potential to risk lives.
“There is a community at the fringes of society that believe they understand the technology around today and they are prepared to take the fastest route to success,” said Steve Bates, chief executive of the Bioindustry Association.
Bates said that “charlatans have always masqueraded and misrepresented emerging science to fund their fantasies”. But he admitted that “social media has enabled the quacks of the 21st century to be more easily heard”, potentially clouding the reputation of serious scientific endeavour happening in experimental medicine.
Traywick, 28, certainly courted social media. He attracted global media attention when he dropped his suit trousers and injected himself with herpes while appearing on stage during a biohacking conference in Austin, Texas in February.
The stunt raised concerns, not only for Traywick’s health, but those who had signed up to Ascendance’s clinical trials. Traywick’s colleague, Tristan Roberts, also live-streamed injecting himself in an attempt to cure his own HIV on Facebook.
Traywick was keen to quash any questions over the company’s legitimacy following the stunts. Ascendance was a “gene therapy accelerator and incubator” focused on creating cheap treatments and delivering them to the general public. This was funded, he told The Sunday
Telegraph, by signing up patients for fertility and menopause reversal trials, 135 of whom paid an average of $5,000 for treatment. It is unclear whether the trials were successful.
Traywick, speaking shortly after his controversial performance, told The
Telegraph that he had 14 different gene therapies in experimental phases, with plans to eventually sell each treatment to patients for $100. “We do not complicate to profit from the suffering of others,” he said. Over the course of a number of conversations over the phone, Traywick failed to deliver evidence that any of these therapies would work, but insisted that the work would transform what he felt was an opaque, impenetrable and wholly prejudiced pharmaceutical industry.
On March 21, the US House of Representatives passed the “right-totry” bill. There are concerns within the industry that it will make it a lot easier for potential treatments to be used that have not undergone sufficient testing, and legitimise experimental treatments that avoid regulators.
“It is not helpful if politicians seem supportive of this, but I guess it is reflecting their frustration with the delays and expense associated with proper clinical trials – even though these are considered the best way to reduce chances of adverse effects and to provide evidence of benefit,” says Robin Lovell-badge, head of stem cell biology and developmental genetics at the Francis Crick Institute.
This might give the US a competitive edge, but it allows Ascendance copycats to fester. Traywick and Roberts are certainly not alone. Entrepreneur Josiah Zayner is famed for his Youtube videos showing him using CRISPR kits for personal modification.
Britain’s biotech industry is overseen by stringent regulation but there is an appetite for discussion around balancing risks with innovation. Legitimate, science-based biotech start-ups share little with the likes of Ascendance, but there is scope for changing how academics can access funding to get treatments from plots of data to clinical trial. Biotechnology, that is biotech start-ups, genomics, diagnostics and digital health, make a significant contribution to the UK economy and to the health and well-being of the population. According to a recent House of Lords report investigating life science’s profitability, it contributed £30.7bn to the economy in 2015 and supports 482,000 jobs.
Louise Houson, UK managing director of Us-based MSD, which recently announced a new research centre based in London, told the Lords committee that this decision “was based on our ability to get access to the best scientific talent”. The UK “is a really good place at the moment to do early discovery-stage science”, she said. Astrazeneca, which has also recently moved a large amount of R&D activity to Cambridge, added that the UK should “play to our science strengths by developing clusters of global excellence in research”, all of which could be bolstered by venture capital and attracting talent into start-up style environments.
Amid the excitement of an industry preparing to take off, there is a lingering unease about the unregulated players that are emerging. Lovell-badge said: “A lot of us have been fearing this might happen for a long time.
“It is so easy to order things [CRISPR gene editing kits] online. The stem cell field has been blighted by companies offering treatments with no benefits.”
The UK’S medicine regulator, MHRA, said that it was not aware of gene therapy kits on the UK market. A spokesman said: “While these products could be imported from outside the UK for personal use, MHRA advice is to think carefully before buying products such as these. It is not clear where they come from, the ingredients are unknown and untested, and they may be harmful and dangerous.”
During a phone call, as he walked to his lab, Traywick described how he felt he had suffered injustice at the hands of America’s healthcare industry and as a result was opposed to regulators.
“When I was a child my family took care of my grandmother in a very small town in rural Alabama. They had diabetes, which was very slowly killing them and it eventually got to the point where the doctors said ‘there is nothing we can do for her but if you want to keep her alive pay us this much money every day’.
“The bottom line was, ‘give us this much money or she dies’. I never want to be in the position my parents were in, I hated them, I hated the doctors, I hated the system of healthcare that let this sort of things happen and I didn’t want it to happen to anyone else.”
It is easy to see where the ambition comes from. Experimental gene therapy saved the life of 11-month-old Layla, who was treated for leukaemia in Great Ormond Street Hospital in June 2015, when all other options were exhausted. These examples are enough to lend hope to those who, with the right funding, could genuinely help people.
“If you look at the case of Layla,” says Lovell-badge, “which was an extreme case when medics had tried everything else, you can see why people like Aaron Traywick are latching on to this notion of offering treatments that bypass clinical trials …. The problem is with rogue stem cell clinics it is so easy to prey on patients for them to pay for cures that are totally bogus”.
Gene editing kits are available online, but have the potential to risk lives, experts warn