
Just have to put in my 2 cents regarding patient support groups. What do I think of patient support groups?
Well, the idea of patients supporting each other seemed a good one. The meet each other, share their experience and learn from each other. They have a shoulder to cry on and someone to turn to in times of need. That's simplistic.
They also share much more than that. They share with each other about their doctors, their treatments and their medications. We all know all patients do not get the same treatment. Whether in terms of the 'expertise' of their doctors (ie good or bad), the type of medications they receive or any other treatments. They compare. Is that good? Will the patients who receive 'lesser' care feel shortchanged? Definitely so. One will argue that this is good for the patients as then they can demand better care, equal to other peers in that group or in other nations. And this will improve healthcare standards as a whole. Ah...
We know not everybody gets equal treatment be it in terms of access, expertise, medications and so forth. Rationed healthcare is practised everywhere. Budget is limited. Somebody has to ration healthcare based on whatever criteria. Like it or not doctors also have the unenvious role of putting this to practise. Healthcare resources are not unlimited. Demand will always outstrip supply.
Then comes the pharmaceutical industry supporting these patient support groups. They subtly reinforce patients on what is the 'standard of care' often importing standards from more advanced countries knowing well that developing countries may not have the means, expertise nor budget to practise what developed countries are doing. And not necessarily what the pharmaceutical industry is promoting is always best for a nation as a whole. They are running a business after all with their headquarters in rich developed nations.
Patients start to feel shortchanged. Patient support group becomes a lobby group. Lobbying to get access to more expensive medications and treatments (thanks to the "support" of the pharmaceutical industry) regardless of the economic reality of the country. Lobby groups wield strong pressure on politicians, reminding them of the next elections and reminding the public that they may be in dire straits one day should they get sick. The public is also worried and pressure is mounting.
The pharmaceutical industry will now be smiling from ear to ear to the bank counting their revenue. They can now cut back on their promotion activities. Lobby groups/ patient support groups are doing the job for them and far more effectively. It doesn't matter to the pharmaceutical company with headquarters in a different continent if millions of people in the country are deprived of other basic necessities just to cater to the exorbitant costs of supporting a few hundred or even a few thousand patients in the lobby group.
And it all starts with "patient support groups". I strongly believe doctors should steer clear from heading these support groups as they will eventually turn into a lobby group through which the doctor would be pressured into promoting the pharmaceutical industry.