'No money in a cure'?? the danger of irresponsible statements ....

I am appalled to read that one of our members was told this by a person with responsibility, education but seemingly poor judgement.

I am also always saddened to read on many occasion that its the big bad Pharma boys who in some way deliberately obstruct the path to wellness, for greed.

I respond as follows and these are of course simply my opinions!

A 'cure' I believe has to be specifically defined, and my take which is not based on any science or indeed expertise is that the 'condition' won't be eliminated but ultimately Patients would live with it without a negative health impact. In a similar fashion to HIV. This does not mean 'drug' free, and as close as symptom free as can be achieved. That for me is good enough. So a cure = no money implying that this is why we don't have one is an irresponsible thing to say.

Pharma's .... I have stated this before, I have worked with a few. Each time I have I have been explicitly clear if I came across anything, anything I found to be unethical, non patient focussed or irresponsible I would take corrective action, whatever that means. Five years in and I haven't had to do so, not once. Now I am not a gullible, 'storytelling patient advocate', marketing pawn type, hell no. I am tough, demanding, transparent and bold. What I have seen and this is from the top, and I mean top down is a passionate dedicated driven team of people who are working tirelessly to bring us safe solutions. Yes they make money, well good we need them to, finding a 'cure' costs money and a lot of it. They are fighting hard to help us, they know every day counts, they do not sit back, they care. Yes, they do. In five years I have spoken to around 5,000 people across the industry, every single one of them is impacted by a proper Patient voice. Not one that is full of 'hope', nor evoking 'pity' or worse 'sympathy' ..... no ...... a strong demanding fairly 'smart' woman who insists on accountability, on action, pushing improvement, driving change, being supportive. None of us is perfect of course but we are all trying to do our very best.

Surely big problems are solved when people work together, share what's important, reveal insight's ditch assumptions and believe in a common aim. We are on one team here. I for one am doing and will continue to do all I can in the spirit of trust. Misplaced?? Not from where I sit.

Kindest, ever...

PS don't forget, bang some bloomin' drums today.....

[Pete-1]

Oh good and particularly well said. Somebody has found the right words to oppose the "mythologists" that I have felt recently to have amassed a weight of opinion that was in danger of moving into the realm of speculation, misinformation and ignorance.

I do believe however that there are dangers to be vigilant about. There is just occasionally the odd individual, who when desperate to make a name for themselves end up introducing bias into test results. Hence the need to make experiments repeatable and to have properly randomised double-blind trials.

There is also the danger of pseudo-science making fantastical claims that upon deeper investigation show the claims to be ill-founded. Pseudo-science may result in persuading desperate and therefore vulnerable people to waste money and hope and sometimes some refuse real help in the form of (usually) drugs that have been tested with rigor and using proper recognised methods to justly enable confidence in results.

Getting back to pharmaceutical companies, I feel confident that those who are responsible for day to day research in the laboratories and that have no or very little concern with budgets and business based decisions are diligent, hard working and devoted to the cause of finding cure.

However when it comes to those at the top whose primary concern is focused on maintaining profit and share price then there maybe some difficulties sometimes with conflicts of interest and so forth.

But then profitability is essential and rightly the first priority of the business. No profits - no business - no medication; apart from a few herbs that haven't been tested anywhere nearly as thoroughly and probably contain a myriad of unknown harmful substances that include their own set of unpleasant side effects or only seem to be efficacious because of the placebo effect.

On another matter some complain of multiplying up efforts as different companies each have their own teams of scientists performing the same research. But this approach may be very fruitful as the teams involved vie for the final test results ahead of the others. In other words competition may spur people on to better efforts. and different teams producing the same or similar results provides extra coroboration that may minimise effort in further stages of research.

[soup]

Well said C.

[4809cats]

Trust me I was appalled when my doctor said it to me! (that post was mine) I'm just glad it got the discussion going on research and profitability of drug companies. It's a game of finger pointing and I think I just had to spill my guts because it just floored me!! I also wanted to know if anyone else out there had been told the same thing. Thank you for your thoughts.

[grey in reply to 4809cats]

I tend to think it rather naive not to suspect - expect? - that a commercial company would not take the most profitable route. Shareholders in general are not ethical investors and expect the board to maximise profits and pay good dividends otherwise they withdraw their investments and damage the balance sheet.

The industry is forever pleading poverty due to large investment in research and development of new product. Billions they tell us. Yet the truth is they invest 1.3% of turnover in R&D. Compare this to 25% invested in marketing. Who has the biggest clout here?

Medical products are a small part of their product range, and PD in turn is competing with a huge bag of other nasty illnesses. The products which offer greatest return on capital invested will win the largest slices of next year's R&D budgets.

Anti wrinkle cream wins over PD because we're not worth it.

[Court]

I have read all the above comments, together with similar ones on other Sites, and especially those from HH who has posted for a long time and whose opinions I trust and respect. I, honestly don't have a clue what is going on behind the scenes, but personally I need to believe that things for us Parkies can only get better. New drugs have helped with my quality of life and I hope will continue to do so. The future - who knows?

[Leyther]

The pharmaceutical industry is like any other business, in my opinion.

Companies have responsibilities to their shareholders and need to be profitable to continue.

Decisions will be made based on the best possible return for the money they have invested in a product.

Ethics wont be considered in an ultimate situation. The only consideration is that the company is acting within the law and that any decision made ensures the best possible outcome for the company.

No company would put itself out of business nor would it seek to invest further in any working solution that it regards as not in the interests of its shareholders eg non profitable.

If the assumption of a cure is based on a one off pill that takes away the effects of pd forever how would you vote as an employee of the company. Would you release it to the public and if so at what price. Would you seek to release it in an effective but non permanent form which meant continuity of employment or would you suppress it.

Whatever you decide is only your opinion, a business may operate differently.

Imagine that this situation has already occurred, that one of the drugs we already have has been administered to us as a maintenance drug when it could have been a one off "cure."

Imagine you work for the company that made that decision or your work is associated with that business. How would you vote.

Imagine you received a one off cure and having been out of work and dependent on insurance / benefits etc for years you had these removed and you were suddenly available for work. Would you cope?

It cuts both ways.

[Johnsilk]

I have worked with Pharmaceutical companies and have formed the following opinions.

As a group of businesses they are no different to any group which is a public companies and responsible to its share holders.

The decisions to be made on the way to a marketable product are all significant financial asks and will be weighed up against other research projects as to market value,,likelihood of success and the basic science involved.

The biggest problem is Govt. barriers to making the drug available to the patients as each new drug has a cost to govt depending on your health system.

I dont believe that finding a cure and hiding it for economic reasons would happen . the threat of law suits would make such a decision untenable let alone the ethics of the situation

.There is one thing we as patients can do to make sure that we get heard oat the Board room table. We should make sure that the researching organizations know what a patient looks like so that they can relate to the problems of PWP.

On two separate occasions this was brought home to me.

Firstly at one of the more prestigious research centers a Professor undertaking PD research with a team of 3PHD's and 3 grads studying to get their PHD were undertaking research and hadn't met anyone with PD. At request of the Prof. a very brave young woman and myself became the ambassadors for PD

On the second occasion the local Country manager for one of the largest Pharma company's ask the local head of the MDS.and myself to talk to ALL their staff, receptionists to research scientists about living with PD as the disease was such a contributor to the well being of each of them.

So lets forget the problematic case of maleficence and be proactive in making our case for research dollars.

[shasha]

ITS ALL VERY WELL YOU ALL HAVING AN OPINION ON PWP AND PD RESEARCH BUT WHAT ABOUT PW PSP ? WHERE IS THE RESEARCH COMING FROM FOR THIS EVIL DISEASE ?

[Hidden in reply to shasha]

Hi Shasha, I was commenting about something that impacts my life, clearly 1000's of people are affected by the most terrible conditions and show courage and bravery. They have my respect. In this instance however it was a response to two things I have picked up on from previous posts. It is not about exclusion. I hope you are having a good day.

Kindest C

[shasha in reply to Hidden]

hi c - sorry when i read it again it sounded a bit self pitying - so take no notice and yes thanks my day is going well

sha xx

[Parkinson_Schmarkinson]

It seems to me that any company that finds a solution to PD would make a fortune and the scientists would win a Nobel.

[shasha in reply to Parkinson_Schmarkinson]

I HAVE YO AGREE WITH YOU ON THIS ONE PARKIE SCHMARKIE