Complicity of Social Sites - Self-Medication.

[StringJunky]

I am a member of a Hepatitis C forum for people who are afflicted with it. I am happy to say that NHS treatment cured me of it and I am in a normal state of health now, luckily.

 

My question is: Is it responsible for the forum administration to be complicit in allowing members to talk to each other about acquiring generic medicines from overseas? I know at least of one or two of them that are treating themselves without medical supervision or, at most, paying privately to have their viral loads tested, and the number is growing. Most GPs won’t agree to help them with the necessary tests to monitor the effects of treatment which can be serious and life-threatening if certain physiological parameters are allowed to fall outside the safe range. Ribavirin, for instance, causes anaemia as a side effect and one either has a dose reduction if the leucocyte count goes too low or even taken off them, which means treatment is cancelled. This is just one example of many potential pitfalls, depending on the state of the patient.

 

My obvious concern is that the membership or administration would not know if a participating member, who stopped posting, had died or suffered seriously from this unsupervised treatment regimen. There is also the unknown variable of whether the imported drugs are counterfeit or not.

 

Buying imported Hep C drugs, through buying clubs is a recent phenomenon; probably a year or so ago it started.

 

The members who report a positive experience and coming out cured are now encouraging those who still have to wait, because they are not ill enough for these extremely expensive branded new drugs, are getting the itch to pursue this generic path themselves. The available treatment for those that don’t qualify, which I did (interferon +ribavirin), is horrible to put it mildly and they don’t want to do it and don’t want to wait either. The cost to the NHS is about £25-30 000 who have to buy in the branded versions, whereas the generic imported version can be bought for about £1000 from Indias by an individul but I can’t help but feel this is going to cause real damage to some people who go this path and we’ll never know, only that they stopped posting.

 

Could there be potential legal ramifications for the admin even though they are not mad on the idea?

Edited August 14, 2016 by StringJunky

[Prometheus]

No idea about the legality. but there are some interesting ramifications for medicine in general.

 

There is a push in medicine towards patient empowerment and the idea of the expert patient: i.e. patients so well informed and educated about their condition they will know more about it than most healthcare professionals. If this is a genuine drive, then there will come a point when patients will make a decision contrary to current medical advice - particularly in a global market where certain treatments have different criteria in various places in the world. I'm not sure we can have one without the other.

[StringJunky]

No idea about the legality. but there are some interesting ramifications for medicine in general.

 

There is a push in medicine towards patient empowerment and the idea of the expert patient: i.e. patients so well informed and educated about their condition they will know more about it than most healthcare professionals. If this is a genuine drive, then there will come a point when patients will make a decision contrary to current medical advice - particularly in a global market where certain treatments have different criteria in various places in the world. I'm not sure we can have one without the other.

In the wider view, it's cost pressures on NHS that is causing this situation of people seeking their own sources of medication. It is not illegal as long as one is doing it for oneself; MHRA (Medicines and Healthcare products Regulatory Agency) policy allows it as long as they are not on the restricted schedules, of course.

 

From an ethical standpoint and the limitation of available funds, it is understandable that the most poorly get treated first but the efficacy and patient outcomes of treatment is best started early, as I'm sure you know. A dilemma really.

Edited August 16, 2016 by StringJunky

[jimmydasaint]

I am a member of a Hepatitis C forum for people who are afflicted with it. I am happy to say that NHS treatment cured me of it and I am in a normal state of health now, luckily.

 

That is good news.

 

My question is: Is it responsible for the forum administration to be complicit in allowing members to talk to each other about acquiring generic medicines from overseas? I know at least of one or two of them that are treating themselves without medical supervision or, at most, paying privately to have their viral loads tested, and the number is growing. Most GPs won’t agree to help them with the necessary tests to monitor the effects of treatment which can be serious and life-threatening if certain physiological parameters are allowed to fall outside the safe range. Ribavirin, for instance, causes anaemia as a side effect and one either has a dose reduction if the leucocyte count goes too low or even taken off them, which means treatment is cancelled. This is just one example of many potential pitfalls, depending on the state of the patient.

 

I just wondered about when a person should be treated as an adult and, knowing the risks, be allowed to self mediate or self cure? As a reasonably educated adult, I make decisions about how to self medicate all the time. For example, I take vitamins and minerals on a regular basis because I believe (conceive) that we have a nutrient rich but mineral poor diet in the UK. I could be wrong about processed foods but I make my choice. In a life-threatening situation I will scour the Internet and then still make my choice. The forum Mods are in a special community and can make sure the members are aware of the consequences of their choices.

 

 

Buying imported Hep C drugs, through buying clubs is a recent phenomenon; probably a year or so ago it started.

 

The members who report a positive experience and coming out cured are now encouraging those who still have to wait, because they are not ill enough for these extremely expensive branded new drugs, are getting the itch to pursue this generic path themselves. The available treatment for those that don’t qualify, which I did (interferon +ribavirin), is horrible to put it mildly and they don’t want to do it and don’t want to wait either. The cost to the NHS is about £25-30 000 who have to buy in the branded versions, whereas the generic imported version can be bought for about £1000 from Indias by an individul but I can’t help but feel this is going to cause real damage to some people who go this path and we’ll never know, only that they stopped posting.

 

From an ethical point of view, can you blame them? I don't. I would use any available method to prolong my life, as long as I was aware of the risks. I suppose the Administrators could write a disclaimer and then let adults make their choices. Was it Harry Potter's Dean who said that our lives are the sum of the consequences? Or was it someone with a more literary reputation.

 

 

[Marpot]

i believe that you shouldn't really try to self-medicate.