Cures for Parkinsons ? - Parkinson's Disease Message Board

Bruce · 12-27-2001, 04:43 PM

This is not intended to be a report of any dramatic discovery that just appeared in the news or it does mot include all areas of research. I reseached this for two days and found a web site sponsered by The Association of thw British PharmaceuticalIndustry and found two areas that biotechnology companies in the UK have focused on as their most promising areas for finding a cure for Parkinsons.

One was research on growth factors. Their goal is to find a substance that would repair damaged dopamine neurons or reverse the progression of pd.

The second area od research is gene therapy. Their goal is to use special methods to insert a gene into non dividing cells (dopamine neurons) and the gene would cause the neurons to produce specific proteins that would lead to the production of dopamine.

Their are companies doing research in these two areas at the present time. Their is no asurance that this will result in a cure and their are no short cuts. It will take severai years.

Bruce

Googy · 12-27-2001, 09:18 PM

Thanks Bruce,you found the info.

Googy

Bernie812 · 12-27-2001, 10:47 PM

Bruce,
The Amgen phase II study that finished up in August was on a product(NIL-A)in a drug category called neuroimmunophilins. This product is now being tested in humans to see if it can regenerate nerve cells and thus slow, stop or reverse PD. In early clinical development this product had tremendous potential. My MDS told me that when the research was presented to a group of PD specialist, they were blown away. The beauty of this product is that it can be administered in the form of a pill. It also is very effective at getting through the blood-brain barrier, something that has knocked out other medications in the past. In fact this was the problem in the early usage of levadopa.

Now the bad news........the results of the phase II study showed the product to well tolerated, but it only produced substantial results on motor skills for a small number of study participants. Amgen has since walked away from the study and returned the rights to the original developer, Guilford Pharmaceuticals. Guilford has stated that they intend to continue development of the product, but I don't believe they have the cash necessary to conduct a big phase III study on their own. They may in fact decide to test the drug on a totally different disease.

There are many questions being asked by PLWP about this phase II study that have yet to be answered. Was it long enough (6 months)? Did they use the right dosages? Was the study group too small (600)?.........
My MDS feels it wasn't given enough time. As she put it, "We're talking about re-growth here. That may take 8 months or a year. Who knows." The real tragedy here is that until Guilford has the cash or a partner, the products potential is on hold. And we continue to wait. Oh....my MDS did tell me that one of her patients in the study got noticeably worse after coming off the study.

You can probably tell I'm venting a little here, Bruce, and I apologize if this is old news to you. Every time I read something about PD research it sets me off. From the point that the researcher identifies a potential drug compound to market takes over ten years. They don't even talk in terms of millions, but now it's a billion dollars. It's absurd and the entire sytem needs to be overhauled. There needs to be more support and incentives for these companies to be able to test these novel drugs. The FDA also must do their part and streamline the governments involvement in the process. Well I've said enough....I originally intended to share a little info on nerve growth, but all this came out. All these great minds working on break-through discoveries, and the process to get the product to those that need it gets worse.

To finish up.....today I fired off an email to CNBC. I asked them why they always talk about the business aspect of a drug trial and not the human side. I also asked why they don't ever mention the real losers in this worsening process, us. I used the phase II Amgen study as a perfect example. Let's see if they respond.

Bernie812

Pelicangirl · 12-27-2001, 11:40 PM

Hi Bernie,

I agree with you 100 percent. I've been hearing 10 years for a cure now for over 10 years and still no cure.

My feeling is that if you get any reply from CNBC at all that it will be a generic, form letter. I guess I'm venting too!!

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Pelicangirl (aka Ruth)

[This message has been edited by Pelicangirl (edited 12-28-2001).]

Bruce · 12-28-2001, 07:08 AM

Bernie, no need to apologize for anything, because I can understand your frustration,

Yes, I am familiar with the group of drugs you mentioned and they are another source for a cure.This is just my opinion, based on my experience, but it is true that funds have a big impact on what types of drugs are tested and which ones, Industry is influenced by the profit motive and I doubt if anything we say will change the situation.

So that leaves the federal government. I believe that Parkinsons research is very under funded and the people who allocate the funds are influenced by politics.

As an example, consider HIV research. It impacted many people and most people assumed, if they contracted the disease, it was quickly fatal. I remember a woman who had HIV gave a speech at one of the political partie's conventions. Gradually, the average citizen begain to realize it could infect you or me.

Their has been a lot of money allocated for a cure for HIV research, which means more research groups began studying this disease. I can also remember when it wasn't known what caused HIV.

The result is their have been enormous strides in HIV research and it won't be long before their is a cure.

Contrast that with the attention pd gets and the result is the research is under funded. The public's view of pd is it is just a chronic disease found in old people and they think no one will die if they are diagnosed with pd, Of course, we know pd is not just a disease of old people, and people do die from complications from having pd.

So with limited funds, the researchers have to make choices on which drug looks like it is the most promising and , being human, the wrong drug might be deleted.

Research takes a lot of patience and many failed studies to find a cure. It's like a baby learning to walk. The baby first learns to crawl and, after many falls, the baby persists and starts taking a few steps, and than the baby gets to that crucial point and walks. The baby is still a little wobbly and has some set backs (falls) but never gives up until he is free and walking like everyone else.

It will be the same thing with pd research, many studies, many failures, but if we all persist and never give up, that elusive cure will come some day. I don't see a quick cure yet, but I am certain it will come some day,

Bruce