[TommyI]

In the past year my Parkinson’s medication, L-dopa, and I have both celebrated our 40th birthdays. In some respects, I suppose that I am lucky that for the last 14 years, I have been able to swallow varying amounts of this drug everyday. It is fantastic. Without it I would not enjoy my life. Despite this, I do not celebrate its 40th anniversary because, in that time, there has been nothing to even come close to replacing it. It has remained the so-called ‘gold standard’ treatment for my illness.

How can this be when every week we hear stories in the media of new therapies, even potential cures for this chronic neurological condition?

The truth is that pioneering new treatments for Parkinson’s have become more of a breeding ground for breakdowns than breakthroughs. The current system of bringing new treatments to market is almost totally reliant on biotech and pharmaceutical companies whose first responsibility has to be to their shareholders, otherwise there would be no investment in this sector at all.

Despite this, these industries are charged with the responsibility of taking basic science and delivering it through an extremely costly, highly risky and prohibitively long regulatory and clinical trial process to ensure safety and efficacy for all new products. The likelihood of taking any product out of basic science and translating it into something for use in the clinic is slim. At best, only one in ten products which reach a Phase I trial actually make it onto the market. There is, therefore, an understandable reluctance to pioneer new products and a propensity towards adapting existing products rather than investing heavily in new science which is high risk and hugely expensive.

Ultimately it is the patients who suffer from these imperfections in the market and the shortage of the development of new treatments.

A further by-product of this lack of control is that pharmaceutical products which do reach the market tend to be disproportionately expensive compared to the real cost of manufacture. This stems again from the totally commercial nature of the development process. Given the frightening statistics on the future burden of healthcare for chronic conditions such as Parkinson’s, it seems likely that this situation will become unsustainable. National Health organisations such as the one in the UK will not be able to maintain the standard of care to which they aspire unless other methods and strategies for drug development are generated. In other countries the system would be far worse, increasing the polarisation of access to medicine between rich and poor.

The three principal stakeholders in the drug development process are the patient, the pharmaceutical industry and the state (- which exercises control over the entire process through regulation, legislation e.g. patents and distribution). Each of these parties have different priorities all of which are positively influenced by innovation; patients feel better, pharma company profits increase and the costs to the state will be reduced dramatically if the new therapies are disease-modifying in nature.

It seems obvious therefore that the duty of encouraging innovation should be a collective responsibility between all three stakeholders. An organisation which pooled the expertise and interests of these stakeholders could act as a hub through which exciting new products could be provided. These prospective treatments could have a structured plan for their development and the resource to accelerate the process. The hub could also provide much needed governance to early stage drug development, making it more risk averse, quicker, cheaper and generally more focussed and effective.

Above all else a culture of teamwork would be created by this new structure. Organisationally, it would sit mid-way between the commercial and public sectors; commercially run but with the profits being reinvested into the business thus retaining its charitable, moral and ethical status. The goal would be to deliver therapies to a stage where the three critical pre-cursors to medical progress would be satisfied; therapeutic benefit, value to the state both in terms of cost and benefit and thirdly, commercial viability.

In this way, therapeutic benefit to patients would be the principal focus but without compromising the required outputs of state and industry.

There is sufficient evidence to suggest that there is science out there to make a real impact on the lives of people living with Parkinson’s – not just in the future – but now! Structural change to the system is needed to convert this science into tangible treatments and such change can be achieved to the advantage of all of those involved in the process – not just the patients.

Is this relevant in the States? I think more than anywhere. Even in 1988 it was cited that by slowing the progress of PD by a mere 10% would save US$327 million p.a. in direct and indirect costs to central Government. Given that a more recent figure suggests that the total socioeconomic burden of PD is projected in the region of US$23 billion p.a. and given that simple demographics show this figure is set to rise dramatically, there is a pretty good reason for everyone to support the speedy development of potentially disease modifying treatments in Parkinson's.

So just to recap:

We need to minimise the hazards involved in the drug development process by spreading risk between the three stakeholders.

We need a critical path upon which good prospective treatments cannot deviate due to commercial frailties

We need a sense of teamwork and “can do” rather than the existing culture of barriers and individual agendas.

AND

We need a Parkinson’s specific hub made up of representatives of those living with the condition, industry and Government (NIH, FDA) to bring focus, drive and ethical and moral status that is incontrovertible. This hub can be the conductor. With help and resource, it can assemble the finest orchestra with the finest instruments and it can re-create the most wonderful harmonious movement ever written – our own.

We have strong argument for change – we are costing a fortune and we don’t look too good either! Let’s use these two arguments and make the case for change. ENOUGH TALK LET’S DO!!!

That is my view. Anyone with me?

Tom Isaacs
The Cure Parkinson’s Trust
www.cureparkinsons.org.uk

[indigogo]

Tom - good formula for those countries whose health care is nationalized (the state in your 3 part equation). But in the United States we also have the health care provider industry and insurance business that are private and profit driven. We also have a state component, Medicare and Medicaid. Complicates things considerably, and private sector health care will still be a big part of any U.S. health care reform, even under an Obama Administration.

Your thoughts?

Hope to see you in Glasgow! -- Cheers --

[TommyI]

Carey

Profit driven healthcare providers make no difference whatsoever to this concept. I am not talking about healthcare reform at all, I am talking about stimulating innovation and accelerating disease modifying treatments to market.

I can only think that you are referring to the fact that in the UK there might be a bigger economic incentive per capita of PD population to generate disease modifying than in the US. This may be true but not by much and anyway, this is not really the central point from which this concept is founded. Could you read my post again and if it is still not clear I shall try and explain it in another way.

Thanks.

Tom

[paula_w]

Tom,

I am off to PA this morning and have to get to the airport, but want to understand what you are saying. Are you suggesting a kind of 'central command center' that pulls together all the research to see the overall treatment potential? Funded by govt, private sector, and industry? And things that are off the table could be returned to the table and reconsidered?

If so I'm with you,
paula

[TommyI]

More or less Paula yes.
It looks like it's just you and me then!!!
Ah well, perhaps my post was just too long to warrant reading.
We are trying to take this forward in the UK. I will keep this forum posted on progress.
Tom

[jeanb]

I'm with you, Tom.

[lindylanka]

count me in, too
lindy

[Jaye]

I'm rather thickheaded about what to do, need a scholarship if I were to go to Scotland, have almost no potential at age 63 (pd dxed for 10 years, present for at least 20), but I endorse what you're doing. I have something I'm working on, so I'd better stick to that for the present.

Is this sort of a Department of Cures?

Jaye

[reverett123]

Tom-
It would help if you could spell it out for us.
-Rick

[annefrobert]

One, two, one, two, three, four
Ev'rybody's talking about
trembling, Slowing, Freezing,Falling, Drooling, Gambling
Treat-ing, that-ing, ising, ising, ising

Only rebooting wolld give us a chance
Only rebooting wiouldl give us a chance

Yeah!
C'mon
Ev'rybody's talking ‘bout
researcher fundraiser, supporters ,shareholders
Talkshops,workshops, Lobbies,close eyes, bye
Bye, bye, bye byes

Fr’m’all we’ve been workin’ emerges our chance
Fr’m’all we’ve been workin’ emerges our chance


Let me tell you now
PwP's talking’of
bad depression, apprehension, lost affection
hesitation strong frustration,
harsch suggestion, stress reaction bad emotions
inhibit all kind of action

Yeahhhhh !
From emotions and feelings emerges our chance
From emotions and feelings emerges our chance
Ev'rybody's talkin' 'bout
Jaye, Bandido, Carey,Tommy,and you Lindy,
Paula, Stitcher, Fiona, Ibken, Rick Everett
Doc John, JeanB, CtenaLouise, Joopoele,
Olsen, Leonore Anne Ze Fée.& all the others
come on Michael
come on Andy
come on M. Ali


All I am singing is give MAN a chance

All I am saying is give EARTH a chance

From emotions and feelings emerges this chance

From emotions and feelings emerges this chance


Strength does not come from physical capacity. It comes from an indomitable will.
I cannot teach you violence, as I do not myself believe in it. I can only teach you not to bow your heads before any one even at the cost of your life.
Mahatma Gandhi


I believe that to meet the challenges of our times, human beings will have to develop a greater sense of universal responsibility.
Each of us must learn to work not just for oneself, one's own family or nation, but for the benefit of all humankind.
Universal responsibility is the key to human survival.
It is the best foundation for world peace.
H. H. the Dalai Lama

"If everybody would agree that their current reality is A reality,and that what we essentially share is our capacity for constructing a reality,
then perhaps we could all agree on a meta-agreement for computing a reality that would mean survival and dignity for everyone on the planet,
rather than each group being sold on a particular way of doing things."
F.Varela

The message is now
"Everybody HAS to agree that their current reality is a reality and that what we essentially share is our capacity for constructing a better reality
then we all HAVE to agree on a higher level, a meta-agreement for a rmeta-reality that is the survival of the Planet and of Humanity,
in respect of dignity for everyone and in this, we may work for all with PD
As so, in no way ,as time has passed by, each group may be sold on a particular way of doing things.
The only way is each ones' choice for his own Middle Way and all in same direction


Anne the little one.