[ View the story "Crowdsourcing a cure" on Storify] Crowdsourcing a cure The Stream looks into the harms and benefits of online medical campaigns.
The Stream· Mon, Apr 07 2014 09:37:20
Terminally ill patients increasingly use social media
to get access to drugs that are not yet on the market. US drug companies and government agencies have released medication for so called "
" in exceptional cases. Ethicists however fear that giving experimental treatment to some individuals might slow down scientific progress for everyone.
Controversy was sparked by the recent case of 8-year-old cancer patient Josh Hardy from Virginia who received unreleased medication after 20,000 people signed a
Following an online outcry, the drug company Chimerix
reached an agreement
with the US Food and Drug Administration to include Josh in a new clinical trial. Family members and other campaign supporters celebrated their success on social media using
So happy for Josh! @chimerix is agreeing to give him the medicine he needs to survive. Thanks to everyone who pushed for this! #savejoshWesam Keesh
I think when it's a matter of life and death, your loved ones will try to do anything to get that help. Our generation especially has the advantage of social media on our side. I do not see any detriments to exhausting every possibility to get help. sssfffsf
Other netizens were more critical about the implications of medical crowdsourcing.
Cases like these make it seem like the only people dying are cute 7 year olds, and not 80 year old cancer-ridden dialysis-dependent debilitated and contracted people. Nanocyborgasm
@AJStream patients are patients for a reason. Otherwise they would be doctors. Reg's are there for a reason #compassionateuseRSG
Yeah, sorry guys but I would rather trust a medical professional over the uneducated masses.Bryn Palmer
@DeemaAlpha @AJStream ...is it rly ethical to do tests on ppl who are so desperate? Even if they do consent, who really benefits?rachel devoy
@AJStream it sounds convincing but I feel it tends to make human an end product for medical research.omo tony
Some also criticised that medical crowdsourcing only helps those patients who are social media savvy.
writes on Reddit:
I'm seeing all these kickstarters and petitions for cancer treatment lately, and I find it immensely disturbing - we all complain about how only the rich can afford treatment, but the alternative we're going for is only those with enough social capitol can get it? Only those POPULAR enough to have a petition signed 50,000 times get to live?reddit.com
Oh, now people can actually save lives with their Facebook "likes" (as long as you're not anything the internet hates)PoliceMachines
@AJStream Science is not a popularity contest. If it doesn't meet demands of scientific rigor, then it should never be put out in the marketOjay Is Ojay
Drugs companies often
to release drugs for 'compassionate use' arguing this could
scientific progress for everyone. If individual treatment fails, government investigations might freeze further research, they say. The netizens below outline the risks of releasing drugs early.
@AJStream When those meds fail, that failure spurs on denialists, tin foil conspiracy theorists and the antiscience movement.Ojay Is Ojay
@DeemaAlpha @rach_devoy @AJStream people don't understand what they are asking for. They'll be the same ones suing in 20 years.Irnise Williams
Others argued people should have a right to try unapproved drugs.
@AJStream As long as they know the risks, absolutely.MadAboutMadMen
@AJStream I have non-hodgkins lymphoma and breast cancer and I feel they should.Cancers take away freedom of choice.It is their life +choiceNorma Mather
@AJStream Ethics to a sick man takes a secondary place when confronted with a possible cureUmar
Broader access to experimental treatment is also discussed by lawmakers in Britain. Following the death of his wife, politician Lord Saachi
a bill that would make it easier for doctors to give cancer patients experimental treatment. In the video below he outlines his proposal to the parliament.
Lord Saatchi outlines the Medical Innovation BillSaatchi Medical Innovation Bill
Twitter users using
had mixed opinions on the 'Medical Innovation Bill'.
The #SaatchiBill's heart is in the right place, but seems unbelievably woolly and open to serious abuse by quacks.
The law shld protect most vulnerable. Terminally ill are desperate & need protection from experiments. Safeguards in #SaatchiBill not enoughMark A Slater
@sean_t_ellis @lecanardnoir It needs a real clear set of regulations, limiting it to science based medicine. Not guidelines. #SaatchiBillSean Kielthy
Put medical innovation into the hands of patients. I’ve had my say. Add your voice:
The debate on 'compassionate use' has also gained momentum among US lawmakers. The State of Colorado recently
a law allowing terminally ill patients to try drugs outside of clinical trial. The states of Arizona, Louisiana and Missouri are also considering the controversial '
Right to Try
Arizona's @GoldwaterInst "right to try" drug bill is poorly designed & would be a boon to cancer quacks:
So much common sense: "#DallasBuyersClub-inspired #RightToTry laws are bad medicine and bad policy" @gorskon