This continues the series of posts about the RxISK Prize. It lays the way for the RxISK Prize and Map which will feature next week
PSSD, PFS, PRSD and PGAD come with a heavy burden of stigma. This is a problem AIDS activists met head-on and conquered in an extraordinary fashion. It had never been done quite like this before by anyone.
In the early 1980s few people wanted to admit publicly they were homosexual. Almost no-one wanted to admit they had a lethal illness that could potentially be transmitted to others. But far from hiding in the face of this, the homosexual and AIDS communities came out fighting. They embraced the stigma. They didn’t quite change medicine as much as it needed changing but it was a landmark achievement.
From Biblical times on, the shame of illnesses have been closely linked to the Stigma of Sin and wrongdoing. Another gladiatorial arena in which stigma burdens one of the contestants starts in the playground in the form of bullying. Like illnesses from leprosy to AIDS it too affects identities.
We are in the middle of an international debate about Harvey Weinstein, as women, for the first time en masse, have come out and let their names be known, and been prepared to live with the possibility others will think they’ve been sullied because of his actions or the actions of other men toward them. This is not about sex – its about power. By acting together in the face of this power, the women at the center of this debate have raised awareness of the need to find a solution to the unbridled exercise of power.
The difficulties faced by sufferers from PGAD, PRSD, PFS and PSSD are in the same domains. There is bad physical damage and equally bad damage to an identity. The difficulties in working out how to recover are formidable and split along sexual lines.
In our culture women, afraid of being attacked by Harry Weinsteins in taxis or walking along the street at night, will often clutch a cell phone. The message is they are in touch with others and the bully or the rapist or the robber won’t get away with it. But this sign of apparent control screams fear and vulnerability.
In the same way women are prepared to say they are taking an SSRI. In some cases the message to everyone listening is they are in control. Taking their SSRI means they don’t breakdown in tears or become hysterical or an embarrassment to others. Everyone can relax.
The messages for men are completely different. Men might be inhibited from using a cell-phone when they possibly should. They are scared to show a weakness or vulnerability. They don’t want to let anyone know they are taking an antidepressant when maybe they had a good reason to do so. And they are very reluctant to talk about being emasculated.
In the late 1990s, Recovery became part of the healthcare lingo. It entered through psychiatry but has spread from there.
At its core lay the idea there are recoveries from illnesses like chest infections but sometimes we also need recovery in the sense of not letting an illness define us. In this sense, the paralysis from a spinal cord injury may never be overcome but the person may rise above it and not let it define her. In the case of disorders we can’t cure, recovery in this second sense becomes ever more important. In the case of mental disorders, which badly affect our identities, recovery in this second sense can be critical.
Many AIDS activists managed to achieve a complete recovery in this second sense even when terminally ill.
But Recovery is a complex issue. Its not just a case of closing our eyes and meditating hoping to open them again on some higher plane. In the case of women abused by Harvey Weinstein or other powerful men, speaking up is part of a recovery. It may help to lay the ghosts of a traumatic event to rest.
But the world still belongs to the Harvey Weinsteins. Men are still more likely to get scripts accepted, get plum acting and director roles, be able to form companies, and can go into auditions confident they aren’t going to be molested or be treated as slightly dim. Around a board room table a man will echo something a woman said earlier and will get the credit for this original idea. We have a long way to go to make a complete recovery from Harvey.
Something nearly as big a change in the world is needed to enable people to recover from Drug Wrecks. A Drug Wreck is a disease like AIDS, but it is also a consequence of an unbridled exercise of power of the Harvey Weinstein type, in this case deployed by doctors and drugs companies, a power that silences those who are affected.
And in the case of both drug companies and Harvey Weinstein and others, the power acts to keep the truth hidden through non-disclosure agreements. Just as with Harvey its not clear that a non-disclosure agreement in the case of actions by drug companies that have led to fraud charges is legally valid.
It looks like we can’t depend on doctors or companies or politicians or even the media to raise awareness of issues like PSSD. They have had these issues brought to them for over a decade but just as the New York Times and other major outlets ignored stories about Harvey handed to them on a plate, they have ignored these and other Drug Wrecks – and are increasingly ignoring them. Things are getting worse not better. We are going to have to do it for ourselves.
The RxISK Prize and Map are not just about finding a cure to PFS, PRSD, PSSD and PGAD – recovery in the first sense – they are also about working toward recovery in the second sense.
We will introduce the RxISK Map next week as a next step in this second form of recovery.
Co-operating in the search for a cure can turn Evidence Based Medicine and the regulation of drugs on its head. Rather than let experts and regulators decide when a cure has been found, there are opportunities here for those harmed by a drug – such as those with PSSD – to say that we are the ones who will decide when the remedy works. We will advise other people who are in the same boat as us or may end up in the same boat as us when it would be worthwhile paying money for this treatment.
If we can make this Prize work in the case of PSSD, PFS, PGAD and PRSD we may be able to make it work for other problems across medicine. At the moment we are in the hands of insurers and others to purchase treatments for us and they do deals behind our backs with pharmaceutical companies and politicians and others. We can turn this around and demand transparency so that everybody who takes a treatment will see the evidence base behind what they are being asked to take and the true cost of providing that treatment.
The men and women who had AIDS, the gay and straight folk, those from developed and developing countries found common platforms and won. It’s time to do win again. Medicine doesn’t look like its going to do it for us without some gentle reminders – if you don’t become experts on adverse events you risk going out of business, dude.
We need researchers in pharmacology, medicine, engineering, network analytics and from any other group who think they can help to take note. We need activists and politicians and maybe teenagers, anyone who can make a difference, to engage with this. We need women in particular.
We need financiers, or perhaps people who have studies crypto-currencies, to realize there are values here that can be turned into capital – but not necessarily a monetary capital.
Above all we need a new compassion for those affected – a compassion that listens and helps bind them into a community that can help. And for this we need to call out to the fortunate who have so far been spared and ask them what they would want for their partners or children or grandchildren should some doctor or pharmaceutical company send misfortune their way.
We conventionally talk about the haves and the have-nots. But long before money was invented there were the fortunate and the unfortunate. Its time to reach out a hand. What gets in the way of them recovering is not some evil spirit or sins of their past life but you and me.